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The Official Publication of the National Ataxia Foundation Volume 39, Number 3 Fall 2011 Unite with NAF in Our Commitment to Ataxia Research

The National Ataxia Foundation has begun its year, the Foundation received a $1.5 million annual Ataxia Research Drive to raise funds for funding commitment for Spinocerebellar Ataxia our ataxia research programs. Over time, these (SCA) research from an anonymous donor. This programs have led to important ataxia findings donation has enabled NAF to create two new such as new ataxia genes, promising therapeutic ataxia research award categories: the Pioneer interventions, and better disease understanding. SCA Translational Research Award and Young The research grants that we fund also act as Investigator Award for SCA Research. Com- a launching pad, enabling many researchers to bined with our existing research grant programs, obtain additional funding for their ataxia research (Research Grant, Young Investigator Award, and from larger institutions such as the NIH who Research Post-Doc Fellowship Award) we now require preliminary data and lab work from their have a total of five unique funding programs grant applicants. to attract the best in ataxia research. Our commitment to ataxia research has been In this difficult economy, we realize that indi- made even stronger this year through the help viduals and families are struggling with financial of a generous research donation. Earlier this uncertainty and downturn. We also know that many of our donors make significant sacrifices to support our organization and research pro- grams. NAF remains steadfastly committed to Inside This Issue our ataxia research programs, and would like to thank you for your steadfast commitment to • Research summaries of grants funded by NAF. Thank you for your continued support NAF appear on pages 4-16 and for making ataxia research a priority in your • The Neuro Film Festival detailed on page giving. 11 could be your shot at fame! • A detailed 2012 Annual Membership NAF’s Ataxia Research Drive – Meeting Preview begins on page 22 What You Can Do: • Check out the NAF merchandise listed Donate to Research – Making a financial con- on pages 28-29 tribution to NAF’s research programs is one of • Find out how to deal with difficult people the best ways to support ataxia research. This on pages 30-32 Continued on page 3 Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 2

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Please direct correspondence to: Generations Staff: National Ataxia Foundation Julie Braun ...... Financial Director 2600 Fernbrook Lane, Suite 119 Sue Hagen ...... Patient Services Director Minneapolis, MN 55447-4752 Mike Parent...... Executive Director Phone: (763) 553-0020 Lori Shogren...... Special Projects Coordinator FAX: (763) 553-0167 Liz Werner...... Outreach Coordinator Internet: www.ataxia.org Design, Production and Printing...... Leader Printing E-mail: [email protected] Generations is published by the National Ataxia Foundation, Inc., Minneapolis, MN. Copyright 2011 by the National Ataxia Foundation, Inc. All rights reserved. We ask that other publications contact us for permission to reprint any article from Generations.

Disclaimer The National Ataxia Foundation does not endorse products, services, or manufacturers. Those that are mentioned in Generations are included only for your information. The NAF assumes no liability whatsoever for the use or contents of any product or service mentioned in the newsletter.

Table of Contents Annual Membership Meeting Articles (cont.) 2012 AMM Preview ...... 22 Accessible Home Design: 2012 AMM Announcement ...... 25 Working with a Specialized Architect ...... 20 Meeting with FDA’s Center for Research Devices and Radiological Health ...... 26 Summaries of Research Grants ...... 4-16 Understanding Clinical Trials ...... 27 AOA2 Study Seeks Volunteers ...... 15 GoodSearch ...... 27 Ataxia Research Drive Underway ...... 15 Caregiver’s Corner ...... 30 Patients with SCA1 Needed ...... 16 IRA Provision Extended ...... 32 Seeking Volunteers for Multiple National Ataxia Registry Is Online Now ...... 36 System Atrophy Research Study ...... 21 Remembering NAF in Your Will ...... 46 Articles Membership Topics Membership Drive ...... 7 NAF Merchandise ...... 28-29 iSearchiGive ...... 7 Chapter and Support Group News ...... 33 How Did You Participate in IAAD? ...... 8 NAF Directory of Chapters, Support Groups and Ambassadors ...... 37 Vehicle Donation ...... 11 Calendar of Events ...... 42 Matching Gifts ...... 11 Memorials and In Your Honor ...... 47 Film Festival Seeking Entries ...... 11 From the Desk of the Executive Director ...... 17 Personal Stories & Poems Support NAF’s Travel Grant Program ...... 18 We Must Be Our Own Advocate ...... 36 NAF Represented at the NINDS Forum to Advance Therapeutic Partnerships ...... 19 The deadline for the Winter issue of Generations is November 4. Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 3

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Unite with NAF... details and contact information for potential Continued from page 1 study participants will help expedite the recruit- ment process for research studies. year, NAF has had a tremendous response to our The NAF website is another great tool for request for research grant proposals – receiving individuals with ataxia who would like to partic- more than 90 letters of intent from researchers ipate in research. On our website (www.ataxia. across the world. The research proposals focus org) we frequently post announcements from on many of the SCAs, Friedreich’s ataxia, AOA researchers actively recruiting for studies, and 1 and 2, Episodic ataxia, MSA, Sporadic ataxia, include links to other sites with information and ataxia gene discovery. about clinical trials. For more information visit These applications undergo a review process the “Research” page on our website. facilitated by NAF’s Medical Research Director. Stay Connected and Informed – NAF is Applications are scored for their scientific merit committed to ataxia research. We work hard to and relevance to ataxia. Then a final recommen- connect patients to researchers, researchers to dation is given to the NAF Board of Directors funding opportunities; and then foster commu- who determine which grant applicants are nication between all stakeholders. awarded funding. This decision is based on the final recommendation from the Medical Research Advisory Board Review Committee and the research funds available. Scientific understanding in one type of ataxia can help bring understanding to all ataxias. Therefore, we urge you to consider donating to the General Ataxia Research Fund. A donation to this fund gives the NAF Board of Directors the greatest flexibility to match the best science with the proper funding. NAF updates the ataxia community about Participate in Research – A great way to con- research via our website, e-Blasts, and our news- tribute to ataxia research is through participation letter. Being a member, signing-up to receive in research studies and clinical trials. Human email updates, and frequenting the NAF website participation in research is paramount to the are great ways to stay connected to the Founda- success and advancement of ataxia research. tion and the latest in ataxia research. We thank Therefore, NAF encourages all individuals with you for sharing in our commitment to ataxia ataxia or who may be at risk for ataxia to sign-up research. on the National Ataxia Registry (https://www. To make a research donation visit the NAF NationalAtaxiaRegistry.org). website www.ataxia.org and click on “Donate The purpose of the registry is to collect basic Now.” You can also donate to research by information on individuals with all types of responding to our Research Drive appeal letter ataxia. This information will then be made avail- or email that will be sent in October. Donations able to scientists who are recruiting patients for can be sent to NAF at 2600 Fernbrook Lane, clinical trials and research studies. Having basic Suite 119, Minneapolis, MN 55447.

Support these research efforts and the work of the Foundation by becoming a member or by making a donation at www.ataxia.org. Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 4

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Research Grant Award Modulation of autophagy as a novel therapeutic strategy for Machado-Joseph disease

Luis Pereira De Almeida, PhD University of Coimbra, Coimbra, Portugal The following is a research summary of a grant funded by NAF for fiscal year 2010.

In our project we found that an important modulate pathological processes that occur in mechanism used by cells to eliminate their un- different neurodegenerative diseases. Therefore, wanted molecules and structures – autophagy, defects in autophagy may underlie or contribute was “blocked” in Machado-Joseph disease to neurodegenerative mechanisms and au- (MJD) due to a lack of a protein called beclin-1. tophagy stimulation can be a therapeutic strategy When we restored beclin-1 levels, autophagy for polyglutamine disorders, particularly MJD. was re-established and the disease significantly We first investigated the participation of improved. autophagy in human brain tissue from MJD Machado-Joseph patients, a lentiviral rat model of MJD (Alves et disease or spinocere- al. 2008b) and transgenic MJD mice (Goti et al. bellar ataxia type 3 2004). We found that there is an accumulation (MJD/SCA3) is a of autophagosomes immunoreactive for the genetic neurode- LC3 marker of autophagy in the brain of generative disorder MJD patients, and in the rat brain upon mutant originally described ataxin-3 expression. This accumulation, sugges- in people of Por- tive of an impaired autophagosome processing, tuguese descent, and prompted us to investigate if the levels of beclin- the most common 1, a crucial protein in the process of autophagy of the dominantly where modified in MJD. Strikingly, we found inherited ataxias that beclin-1 levels where decreased in human Dr. Luis Pereira worldwide. MJD is dermal fibroblasts and in the brain of transgenic De Almeida associated with ex- MJD mice. pansion of the number of CAGs within the Therefore, we overexpressed beclin-1 in a coding region of the causative gene - MJD1. neuronal in vitro model and in our lentiviral The abnormal over-repetition of the CAG rat model. Beclin-1 overexpression activated trinucleotide is translated into an expanded autophagy, specifically promoted clearance of polyglutamine (polyQ) tract within ataxin-3 mutant ataxin-3 and its aggregates, and protected (Atax3), resulting in severe clinical features. No from neuronal dysfunction and degeneration treatment that modifies disease progression is induced by mutant Atax3 expression resulting in available. neuroprotection. Recent evidences suggest that autophagy may These studies validate the therapeutic target  Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 5

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– autophagy – and will hopefully contribute for Ferreira, Lıgia Sousa-Ferreira, Gwennaelle the development of a therapy for MJD. We are Auregan Isabel Onofre, Sandro Alves, Noelle presently screening drugs, which have recently Dufour, Veronica F. Colomer Gould, Arnulf been found to promote autophagy, in models Koeppen, Nicole Deglon and Luis Pereira de of this disorder. We expect to contribute to Almeida. development of a therapy able to delay or block A Research News article was recently pub- disease progression. lished online over this paper: “Self-devouring – The results from this Research Grant were is this the answer to neurodegenerative diseases?” published in the following publication: 02 May 2011, by Catarina Amorim, PhD. See Brain (2011) doi: 10.1093/brain/awr047 www.alphagalileo.org/ViewItem.aspx?ItemId=1019 (impact factor = 9,6) “Overexpression of the 33&CultureCode=en autophagic beclin-1 protein clears mutant We would like to thank the National Ataxia ataxin-3 and alleviates Machado–Joseph disease” Foundation for the generous support of this Isabel Nascimento-Ferreira, Tiago Santos- project.

Research Grant Award Cerebrospinal fluid biomarkers in Spinocerebellar ataxia

Christopher M. Gomez, MD, PhD Department of Neurology, The University of Chicago, Chicago, IL The following is a research summary of a grant funded by NAF for fiscal year 2010.

Although genetic advances in ataxia worldwide would enable design of more efficient clinical have been impressive, and will eventually lead to trials (i.e, needing fewer patients and shorter targeted therapies for ataxias, we have had com- study times). paratively less success in preparing to be able to This study seeks to identify changes in the measure the success of a potential treatment in cerebrospinal fluid (CSF) that could yield terms of arresting or slowing the progression insights into mechanism and possibly the devel- of disease. One solution for this is to develop opment of biomarkers. disease biomarkers, i.e., biological measurements For this project we asked 20 ataxia patients that provide reproducible quantitative or semi- (SCA1, SCA2, SCA6, MSA-C) and 20 normal quantitative information about the severity, subjects to participate in a study to analyze their stage, or type of disease. For example, serum cerebrospinal fluid for molecular abnormalities blood glucose serves as a disease biomarker that that would help determine the type and stage of gauges the severity of diabetes. Disease biomark- the disease. There were no complications or ers may provide information about the disease discomfort from the spinal taps of the ataxia or mechanism or process or if properly validated, control subjects who generously agreed to may even serve as surrogate measures to detect participate on a purely research basis. disease progression more precisely and sensi- tively. Measuring progression more sensitively Continued on page 6 Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 6

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Cerebrospinal fluid biomarkers... SCA2, with no significant differences observed Continued from page 5 between controls and patients with either SCA3 We first selected individual proteins that or SCA6. we suspected might be abnormal in the CSF of GFAP is a protein that increases in glial (non some ataxia patients. neuronal) cells that multiply (gliosis) when neu- We used commer- rons die. Using magnetic resonance spectroscopy cially available assay our collaborator, Gulin Oz previously found kits called ELISA neurochemical evidence of gliosis in brain tissue kits to test for two in patients with SCA1, SCA2 and MSA-C. Our protein levels, a- synuclein and glial preliminary studies showed that CSF levels of fibrillary acidic GFAP where approximately 2.5 times higher protein (GFAP). a- than the controls in patients with SCA1 and synuclein is the SCA2. Patients with SCA3 showed a GFAP main protein found concentration approximately five times that of accumulating in the controls. SCA6 patients showed no differ- Dr. Christopher M. brains Parkinson’s ence in GFAP concentration and those patients Gomez disease (PD) and is with MSA-C showed only a moderate increase important in Alzheimer’s disease. a-synuclein concentrations are reduced in PD. Our prelimi- in GFAP relative to the control (~1.6 times). nary studies showed that CSF concentrations of We hope that these preliminary studies will lead a-synuclein were significantly higher of relative to new insights about disease mechanisms and to controls in patients with MSA-C, SCA1, and more efficient tools to gauge disease stage.

Research Grant Award Molecular function of senataxin protein, defective in ataxia oculomotor apraxia type 2 (AOA2), in regulation of human gene expression

Natalia Gromak, PhD Sir William Dunn School of Pathology, University of Oxford, Oxford, United Kingdom The following is a research summary of a grant funded by NAF for fiscal year 2010. Ataxia oculomotor apraxia type 2 is a neuro- abling disease encodes a protein called senataxin. degenerative inherited disorder characterised Since the discovery of AOA2 mutations in 2004, by degeneration in the brain and spinal cord, little progress has been made to characterize the causing progressive muscle weakness and finally function of senataxin protein or molecular atrophy. The gene mutated in this highly dis- mechanisms of AOA2 pathology.  Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 7

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To study the function of senataxin protein in ers that faulty RNA processing may represent a human cells, we combined our expertise in common pathogenic mechanism involved in RNA field with cutting edge high throughput many neurodegenerative disorders. This empha- technology in gene expression. In particular, we sises the importance of fundamental molecular performed experiments in human cells which biology approach of our research towards under- have been depleted of senataxin protein or standing AOA2 pathology. Today around 50% derived from patients’ tissues. We are proposing of all characterised human genetic diseases are that the AOA2 pathology arises due to defects in associated with inappropriate transcription/RNA senataxin function as a helicase enzyme which processing. In the unwinds hybrids between RNA and DNA, long term, we are appearing during the process of transcription in hoping to use the the cells. If RNA/DNA hybrids are not resolved insights from our properly, their accumulation can be detrimental research project and to the cells causing disease. Initially in our proj- translate them into ect we characterised the defects in transcription data that is benefi- and RNA processing observed in cells with cial to patients, in senataxin mutations using modern technologies particular with a and analysing whole cell genome. We discovered view to eventually that mutations in senataxin protein cause defects developing novel in transcription initiation and termination pharmacological and perturbing normal gene expression process. In RNA-based molec- Dr. Natalia Gromak addition, we established that lack of senataxin ular therapies, improving the health and quality protein affects the recruitment of the key player of life of AOA2 patients. in transcriptional termination process, Xrn2 We are very thankful to NAF for support of protein.1 These results suggest that AOA2 mu- our research program. tations cause abnormalities in basic cell processes, such as efficient protein production. 1 K. Skourti-Stathaki, N. J. Proudfoot and N. Uncovering the molecular cause for the Gromak “Human senataxin resolves RNA/ pathology of AOA2 disease has to be ranked as DNA hybrids formed at transcriptional pause one of the current major challenges in the devel- sites to promote Xrn2-dependent transcriptional opment of AOA2 therapies. This project discov- termination.” Molecular Cell in press.

Membership iSearchiGive.com Drive iSearchiGive.com is a new search engine powered by Yahoo! Search and iGive.com Thank you to all who have given to the is the internet’s first online shopping mall 2011 National Ataxia Foundation Annual where a portion of each purchase is Membership Drive. Your gift is working hard donated to a charity of your choice. every day in supporting important programs Sign up today and indicate that National and services. Ataxia Foundation is your favorite cause. If you have not yet given, you can still It is totally free with no hidden fees and make an impact by joining today online at provides support for the important work of www.ataxia.org. Thank you! the Foundation. Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 8

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Research Grant Award Identification of compounds that modulate ataxin-3 aggregation and neurological dysfunction in a C.elegans model of Machado-Joseph disease Patricia Maciel, PhD School of Health Sciences, University of Minho, Braga, Portugal The following is a progress report of a research project funded by NAF.

Machado-Joseph disease (MJD), also known as which has been generated in our lab, expresses spinocerebellar ataxia type 3, is caused by muta- the mutant human protein in its nervous system tions in the protein ataxin-3 that make this pro- and replicates important features of the disease, tein prone to aggregate and toxic to specific such as the aggregation of ataxin-3 and a neuro- groups of neurons. This leads to the progressive logical impairment of the animals (including ab- neurodegeneration and to the typical symptoms normal movement). We used it to screen a panel of MJD: ataxia and severe limitations in eye of 1,120 FDA-approved compounds, selecting movements among others. Currently there is no those that, while not toxic to the animals, prove effective treatment for this disorder. Our goal was to reduce ataxin-3 aggregation and/or to improve to test a large number of commercially available the worms’ neurological phenotype, i.e. improve chemical compounds as potential therapies for their motility. So far, we have identified six MJD. For this, we used a model of the disease in compounds that markedly reduced motor the worm C. elegans, which in spite of being a impairment of the animals and/or mutant ataxin- very simple animal possesses a very well charac- 3 aggregation. Moreover, we have selected a terized nervous system, is quite well character- number of promising small molecules that are ized at the genetic level, is transparent – allowing still in test. These compounds will provide good monitorization of events within the neurons in candidates for further testing in mouse models of the live animal, and, unlike mouse models, is MJD/SCA3 and eventually for future clinical amenable to large scale drug studies. This model, studies.
How Did You Participate in International Ataxia Awareness Day? The 12th annual International Ataxia Aware- proclamations so the entire NAF community can ness Day held on September 25 is now history, relive this historic day. but your stories on how this important day Please send your information to Liz Werner was recognized could live on in a future issue of at [email protected], or by mail to National Ataxia Generations. Foundation, 2600 Fernbrook Lane, Suite 119, Please send us your articles, photos, and Minneapolis, MN 55447-4752. Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 9

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Research Grant Award Understanding the ubiquitin code in disease: From protein function to protein structure

Sandra de Macedo Ribeiro, PhD Instituto de Biologia Molecular e Celular – IBMC, Portugal The following is a research summary of a grant funded by NAF for fiscal year 2010. Machado-Joseph disease results from the ex- 3 proteolytic function and macromolecular pansion of a polyglutamine sequence within the recognition by post-translational modifications protein ataxin-3. The self-assembly of mutated by ubiquitin-like molecules. We have identified ataxin-3 and subsequent formation of intracellu- a novel post-translational modification occurring lar inclusions is a key fingerprint of the disease, both in normal and mutated ataxin-3, whose role independently of their controversial role in neu- in inclusion body formation will be further ex- rodegeneration. Our study aimed at developing plored in the context of this devastating polyg- tools to understand the fine regulation of ataxin- lutamine disease.

Research Fellowship Grant Regulation of neuronal genes by the alpha1A C terminus of Calcium channel and disruption in SCA6 Xiaofei Du, MD The University of Chicago, Chicago, IL The following is a research summary of a grant funded by NAF for fiscal year 2010. Description: Spinocerebellar ataxia type 6 Purkinje cells which suggests that 1ACT is an (SCA6) is one type of genetic disorder charac- important gene expression mediator.α Interest- terized by slowly progressive incoordination of ingly, we also observed that 1ACT with the gait and poor coordination of hands, speech, and normal range polyQ can enhanceα the neurite eye movements. Abnormal expansions of a outgrowth in well established neural cell model trinucleotide CAG repeat (polyQ) in the C PC12 cell, but the effect of the 1ACT on terminus of the 1A subunit ( 1ACT) of a neurite outgrowth are lost in SCA6α polyQ- calcium channel moleculeα are responsibleα for this expanded 1ACT. Through the support disorder. The 1ACT bearing the normal range from NAF,α I used molecular approaches to of polyQ canα be physiologically cleaved and normally translocated to the nuclei of cerebellar Continued on page 10 Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 10

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Regulation of neuronal genes... developed another mouse model to study the Continued from page 9 function of 1ACT. Having both 1A knockout (KO) and α1ACT (bearing Q4) transgenicα mice characterize the normal function of 1ACT on on hand, weα crossed these two mouse lines to gene expression and neuronal differentiationα and get 1ACTQ4/CACNA1A-KO, double trans- the abnormal function of the SCA6 polyQ- genicα mouse. The mobility of 1ACTQ4/ expanded 1ACT. I CACNA1A-KO mouse, morphologyα and found thatα 1ACT, connection of Purkinje cells in the cerebellum as a gene expressionα are obviously improved compared with controls. mediator, enters the Dendrites of Purkinje cells are shortened in nuclear, recognizes 1AKO mice, but they have been rescued the binding site inα CTQ4/ 1AKO double transgenic mice. (TTATAA) of the Purkinje cellα dendrites in double transgenic mice target genes and are relatively healthy and more similar to wild functional regulates type. expression of these Significance: This project provides important genes. 1ACT is insights into the physiological function of also foundα to be 1ACT in maintaining a healthy cerebellum. At Dr. Xiaofei Du involved in neuro- theα same time, elucidating the exact mechanism genesis or at least in maintaining neuronal underlining SCA6 will direct development of cells in a normal differentiated state through future novel therapies directed at the root cause PRMT1/BTG methylation pathway. We also of SCA6.

Research Fellowship Grant Identifying common genetic modifiers of Spinocerebellar ataxias (SCAs) using Drosophila model

Keyi Zhu, MD, PhD Baylor College of Medicine, Houston, TX The following is a research summary of a grant funded by NAF for fiscal year 2010.

Spinocerebellar ataxias (SCAs) belong to a condition. There is currently no cure for these group of neurodegenerative diseases that affect disorders. A promising approach to identify the cerebellum, brainstem, and other parts of the potential therapeutic avenues and pathogenic brain. Mutations in genes causing some of the mechanisms is to discover genetic modifiers of SCAs have been identified but we still know SCAs; i.e., genes capable of modulating the toxic little about the function of the SCA causing effects of the SCA mutation. My goal is to proteins and how a single gene mutation leads to identify such genetic modifiers in the case of such a severe and irreversible neurodegenerative SCA1, 2 and 7. These three SCAs are poly- Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 11

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glutamine diseases caused by a CAG repeat ex- large screens to discover enhancer (deleterious) pansion encoding a polyglutamine tract in their or suppressor (beneficial) modifiers of SCA2 and genes. In the current study, we generated three SCA7. We will examine the molecular mecha- Drosophila (fruit fly) models of SCA1, 2 and 7 nisms by which by introducing the human gene causing the cor- these modifiers, es- responding SCA into the Drosophila genome. pecially suppressors, We have carefully characterized these models and confer protection shown that they faithfully recapitulate key fea- against SCA1, 2 and tures of the disease such as late onset, progressive 7 when their activi- degeneration and characteristic cellular and mo- ties are altered. By lecular neuropathology. Behavioral examination carefully studying shows that these transgenic flies have motor the modifiers that deficits that are reminiscent of the loss of coor- are common to dination in SCA patients. Histological examina- SCA1, 2 and 7 we tion shows retina degeneration reminiscent will better under- of the blindness observed in SCA7 patients. stand the molecular Dr. Keyi Zhu Reduced life span of the transgenic animals is mechanisms of the disease initiation and pro- observed as well. We have a large collection of gression, and more significantly, we expect to genetic modifiers of SCA1, and we are initiating identify potential therapeutic targets of SCAs.
Vehicle Donation Film Festival The donation of your vehicle to the Na- tional Ataxia Foundation will help support Seeking Entries the important work that is being done on Your Film Could Win the Grand Prize behalf of all who are affected by ataxia. of $1,000 and a Trip to New Orleans! To donate your car, truck, or motor home, One in six Americans is affected by a call the NAF office at (763) 553-0020. Your brain disorder. The American Academy of vehicle will be picked up at your home, of- Neurology Foundation is now seeking video fice or other place that you designate. Be entries for the 2012 Neuro Film Festival. sure to have the certificate of title with the People are asked to submit a short video vehicle. telling their story about why more research is needed into finding cures for brain disor- ders. Winners could receive up to $1,000 and a trip to New Orleans to see their film shown to a live audience at the 2012 Neuro Matching Gifts Film Festival. The deadline to enter is Jan. Many employers will match your gift to the 31, 2012, at www.NeuroFilmFestival.com. National Ataxia Foundation through a Match- Now in its third year, the Neuro Film Fes- ing Gifts Program. This valuable benefit will tival aims to raise awareness about the allow you to have twice the impact on the need to donate money for research into the lives of families affected by ataxia when you prevention, treatment and cure of brain dis- make a donation to NAF. orders such as Alzheimer’s disease, stroke, Please ask your employer if they have a autism, Parkinson’s disease and multiple matching gifts program. If they do, your gift sclerosis. and the gifts of your co-workers will double Let’s be certain that ataxia is represented in value. by a video. Lights, camera, action! Gen_1103_01-12.qxp:Layout 1 9/21/11 10:54 AM Page 12

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Friedreich’s Ataxia Special Project Award Manipulation of frataxin expression in neurons

Filip Lim, PhD Richard Wade-Martins, PhD Universidad Autonoma de Madrid, Madrid, Spain University of Oxford, Oxford, United Kingdom The following is a research summary of a grant funded by NAF for fiscal years 2008-2010.

Dr. Filip Lim and Dr. Richard Wade-Martins effective therapeutic strategies for this disease. are long-standing collaborators. Their laborato- Another part of our project was dedicated to ries and colleagues have been working together obtaining cultures of neurons directly from live to develop better neuronal and molecular mod- FRDA patients. Olfactory mucosa is currently els to further understand the pathogenic mecha- the only living human tissue containing neural nisms of Friedreich’s ataxia (FRDA), and also to cells which can be obtained by noninvasive explore gene therapy as a potential treatment for biopsy from patients. We have successfully the neurodegenerative aspects of the disease. established a method FRDA is a disease caused by a mutation in the to grow cells from gene coding for frataxin (FXN), which results in nasal biopsies of a triplet sequence (GAA) being repeated up to healthy donors as 1700 times as a giant expansion in the mutated well as FRDA pa- FXN gene. It is still not known how this expan- tients, and we are sion occurs and exactly why it is pathological. also able to differen- tiate them along the While many research groups use short artificial neuronal lineage so versions of the frataxin gene, we have used the that we can study complete lengthy version of the gene as it occurs why the nervous naturally on human chromosomes, which allows system of FRDA a deeper understanding of the mechanisms caus- patients is affected Dr. Richard ing FRDA, by more closely resembling what by the FXN gene Wade-Martins happens in mutated cells. We modified the full- mutations. Finally, following on from our previ- length gene to include the giant GAA expansion ous work showing that motor coordination loss mutation, added a reporter gene called “lu- in FRDA model mice can be rescued at least in ciferase” which flashes light when activated, and the short term by viral vectors carrying a short finally we introduced this mutated full length artificial FXN gene, in this project, we sought to frataxin gene into cells derived from neurons. develop a viral vector which would be capable of When the gene is active we record the flashes of achieving long-lasting gene therapy in an animal light to monitor how the mutant and normal model. For this, we genetically tagged one of copies work. Since most of the pathology of our viral vectors which contains the complete FRDA is neurological, the use of suitable nerve lengthy version of the FXN gene, with a cell (or neuronal) models to study the effect of “reporter” gene which we can detect by color the normal FXN gene and its mutated version is changes in the cells where it is active, thus giving of vital importance for the identification of us a way of following how long the viral vector  Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 13

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is active. viral vectors carrying the natural full-length Our work demonstrated for the first time, the FXN gene do indeed remain active much longer transfer of a full gene by a viral vector into the than those with short artificial genes and may brain of an adult mouse; our findings show that have the potential to provide lifelong therapy.

Young Investigator Research Grant Award Deconstructing the transcriptional dysregulation of Spinocerebellar ataxia type 7 retinal degeneration

Paula Ladd, PhD University of California – San Diego, San Diego, CA The following is a research summary of a grant funded by NAF for fiscal year 2010. Spinocerebellar ataxia type 7 (SCA7) is an genes and proteins that interact with Ataxin-7 inherited neurological disorder that leads to and the STAGA complex in retina tissue. When progressive loss of neuronal function in discrete Ataxin-7 harbors a CAG repeat expansion, it is regions of the brain resulting in loss of coordi- not able to regulate its target genes, resulting in nated movement, as well as progressive blindness. these genes being The mutation is dynamic, meaning it changes turned off in the size, most commonly enlarging from one gener- retina, ultimately ation to another. Typically, the larger the CAG leading to blindness. repeat expansion, the earlier the age-at-onset and I can see a reduction the greater the severity of disease. How the CAG of these genes in repeat expansion interferes with normal Ataxin- symptomatic mice. I 7 and the STAGA complex is not fully under- do see that several stood. My hypothesis is that the Ataxin-7 protein genes that are impli- can associate with the STAGA complex whether cated in developing containing normal or expanded CAG repeats, retinal tissue are however, its activity is compromised. Accord- turned on in these ingly, my objective is to understand what is hap- mice, suggesting Dr. Paula Ladd pening inside the cell as a result of this mutation. that there is a change to the retinal cell at the time By comparing normal, or wild type mice to mice that the disease symptoms occur. Also at the engineered to have the SCA7 disease, I can ask symptomatic time point, we see an increase in what differences are apparent between how the certain proteins that are associated with genes normal versus mutated cells function. that are not active. This is consistent with our Thanks to engineered SCA7 mice, we under- hypothesis that the expanded Ataxin-7 gene up- stand that Ataxin-7, the gene involved with sets the nature of active and silent genes within SCA7, associates with a group of proteins called retinal tissue, corresponding with the onset of the STAGA complex. I have interrogated known disease phenotype.
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Young Investigator Research Grant Award The identification of putative drug targets for SCA3 using Drosophila melanogaster Leeanne McGurk, PhD University of Pennsylvania, Philadelphia, PA The following is a research summary of a two-year grant funded by NAF for fiscal years 2009 and 2010. The most common dominant inherited ataxia used a fly model for the disease in which the mu- is spinocerebellar ataxia type 3. The mutation is a tant ATXN3 gene was turned on in the eye. The large expansion of DNA (called a CAG-trinu- presence of the mutant Ataxin-3 protein causes cleotide expansion) in a gene called ATXN3. the eye cells of the fly to die, these flies show a When the amino acids make the protein from the very severely degenerate eye. We then tested ATXN3 gene, the CAG makes the amino acid whether a set of genes that had been predicted to glutamine (Q) in the protein. In patients with interact with the Ataxin-3 protein could affect spinocerebellar ataxia type 3, when the Ataxin-3 the degeneration of the eye. We changed the protein is produced, levels of the genes, and looked for restoration of it contains more Q’s eye structure and color. We found three genes than in the normal that are important for the eye, because when we Ataxin-3 protein. reduced these genes they made the degeneration The disease protein worse. We also found one gene that when silenced is called a polyQ restored the eye and stopped the degeneration. protein because of We studied how these genes may function, and this polyQ domain. this suggested that altered levels of the ion The polyQ protein calcium may be critical. This suggests that ways with an abnormally to control calcium in the cells may be of benefit. long polyQ region An intriguing aspect of the ataxin-3 protein is causes the brain cells that the mutation is also present in a number of Dr. Leeanne McGurk to no longer func- other proteins that also cause spinocerebellar tion properly, and the cells eventually die. Our ataxia. So we also looked for possible interactions research, which was funded by NAF, used the with other so-called polyQ proteins. This re- genetics of a very simple system, the fruit fly vealed that there are strong interactions between Drosophila, to identify potential drug targets to the Ataxin-1 protein and the Ataxin-3 protein. help maintain the health of brain cells with the We then found that our gene that stops degener- mutant Ataxin-3 protein. ation of Ataxin-3, can also stop degeneration of The fly has many of the genes that are present Ataxin-1. Thus there may be a network of genes in humans, but in the fly, we can tweak the genes that cause disease that are all connected biologi- to learn about their function. In addition, we can cally in the cell. Thus, our study used a very grow up flies rapidly and in large numbers, so it simple system, the fly Drosophila, to define new is relatively simple to discover how proteins cause pathways that regulate ataxia. These findings will disease. To study spinocerebellar ataxia type 3, we provide the foundation for therapeutic insight.
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Young Investigator Research Grant Award Understanding the role of altered physiology in the pathogenesis of SCA3 Vikram G. Shakkottai, MD, PhD University of Michigan Medical Center, Ann Arbor, MI The following is a research summary of a grant funded by NAF for fiscal year 2010. We investigated the idea that alterations in the their balance and firing properties of nerve cells in the cerebellum ability to walk. We (one of the important brain areas for coordina- demonstrate that tion of movement) may be affected in there are early Spinocerebellar Ataxia type 3 (SCA3). Using changes in the abil- recordings from nerve cells in the cerebellum ity of specific nerve from brain slices from a mouse model of SCA3, cells to communi- we have identified that prior to the loss of nerve cate using electrical cells, many cerebellar nerve cells lose the ability signals in a mouse to communicate using electrical signals. We have model of SCA3. identified an associated defect in the ability of Changes in the these nerve cells to channel ions through their function of nerve Dr. Vikram G. membranes that is the likely cause for the cells in SCA3, even Shakkottai electrical defect. Using a chemical that promotes in the absence of the transfer of potassium ions through the neuronal loss, may explain some of the symptoms cell, we could improve the ability of the nerve seen in this disorder, and modulation of potas- cells to generate electrical signals. Administering sium flux through the cell represents a promising this chemical to the SCA3 mice improves therapeutic target in SCA3.

AOA2 Study Ataxia Research Seeks Volunteers Drive Underway There is a research study currently The National Ataxia Foundation needs underway at the University of Minnesota, your help in supporting promising ataxia Minneapolis campus. Patients with Ataxia research by contributing to the 2011 Annual with Oculomotor Apraxia Type 2 (AOA2) are Ataxia Research Drive. being recruited for this study. As you can see from the updates in this Travel expense reimbursement is avail- issue of Generations, promising research is able up to a certain dollar amount. being done by dozens of scientists around If you, or someone you know has AOA2, the world. please contact Diane Hutter at hutte019@ Please make your online gift today at umn.edu for more information, or call Sue www.ataxia.org, and help our cause by Hagen at the National Ataxia Foundation at spreading the word to your friends and (763) 553-0020. family. Thank you for your support. Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 16

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Young Investigator Research Grant Award Molecular Mechanisms of Beta 3 Spectrin in Spinocerebellar Ataxia 5 (SCA5) Michael Stankewich, PhD Yale School of Medicine, New Haven, CT The following is a research summary of a grant funded by NAF for fiscal year 2010. Spinocerebellar Ataxia Type 5 (SCA5) is an The research provided the first detailed glimpse inherited, progressive condition of the central into the pathology associated with the loss of nervous system that typically begins in midlife beta3 spectrin. Without beta3 spectrin, certain with loss of coordination of the hands and arms, key neurotransmitter receptors and transporters impaired ability to fail to assemble properly in neurons called walk and sometimes Purkinje cells that constitute the sole output of slurred speech. all motor coordination in the cerebellar cortex. Abraham Lincoln, These receptors and transporters are both who had an awk- reduced and misplaced from the Purkinje cell ward, uncoordi- synapses. As a result, mice lacking beta3 spectrin nated gait, is are ataxic and prone to seizures. believed to have suf- SCA5 is a genetic disease, so therapies designed fered from SCA5. to directly target the defect in beta3 spectrin in Earlier studies had humans are probably far in the future. However, identified genetic understanding the precise receptors and mutations in the transporters affected by the loss of beta3 spectrin Dr. Michael Stankewich protein beta3 spec- may point the way to key molecules in the brain trin as the cause of SCA5. In our study, we set that account for symptoms of the disease, out to determine how this happens by studying and that may prove to be attractive and readily the cellular and molecular consequences of assessable targets for the development of new removing beta3 spectrin from the brains of mice. therapeutics.

Patients With SCA1 Needed Patients with Spinocerebellar Ataxia Type 1 one-and-one-half hours while listening to the (SCA1) are needed for a magnetic resonance music of their choice. imaging (MRI) study to evaluate the chemistry Expenses will be covered. In addition, research of the brain in ataxias at the Center for Magnetic subjects will be reimbursed for their time. Resonance Research at the University of Min- If you are interested in participating or have nesota. questions, please call Diane Hutter at (612) Research subjects will lie in the scanner for 625-2350 or email [email protected]. Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 17

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From the Desk of the Executive Director

Autumn is here and for many of us means ataxia research studies being considered this cooler days and the magnificent beauty of fall year, there is even a greater need for your colors. It is also a time that the National Ataxia support. We ask that you give as generously as Foundation begins reviewing important ataxia you can in support of these vital ataxia research research applications from around the world. efforts. In many cases, what we learn from one The National Ataxia Foundation has received form of ataxia impacts many other forms of more than 90 applications from scientists around ataxia. While NAF welcomes designating your the world who are applying for research funding. research gift to specific type of ataxia, we ask These applicants include researchers from Aus- that you consider designating your support to tralia, Brazil, Canada, China, France, Germany, the “General Research Fund” so that the best Italy, Netherlands, Portugal, South Africa, Spain, science is funded to help further all ataxias. United Kingdom, and the United States. The Over the past 12 years, because of the gen- number of applications has more than doubled erosity of our donors, the National Ataxia compared to just last year. Foundation has funded 152 These scientists are applying promising ataxia research studies for funding to help further their in 11 countries. Through these important ataxia research efforts. research efforts, scientists have This year the National Ataxia found various ataxia genes, have a Foundation is offering five ataxia better understanding of gene research programs: NAF Re- functions, and are now conduct- search Grant, NAF Research ing clinical trials. Your research Post-Doc Fellowship Award, gift provides a profound impact on NAF Young Investigator Award the National Ataxia Foundation’s for SCA Research, NAF Young ability to fund the best and most Investigator Award, and the promising science in the world. NAF Pioneer SCA Translational To help insure that the most Research Award. Michael Parent promising of these studies are Due to the generosity of an anonymous donor, funded, leading scientists from around the world two of these research programs are new this year, with expertise in specific types of ataxia will the NAF Pioneer SCA Translational Research participate in the reviews of these applications. Award and the NAF Young Investigator Award They will evaluate the applications for scientific for SCA Research. merit and relevance to ataxia, with a minimum Research applications are focusing on many of of two reviewers per application in addition to a the SCAs including SCA 1, 3, 5, 6, 7, 9, 14, 17, scientific panel review. The research funds are 26, and 28; Friedreich’s ataxia, AOA 1 and 2; awarded on a competitive basis; only the best Episodic ataxia; MSA; Sporadic ataxia; and many science receives funding through this multi- others including research on the discovery of level review, with the final funding decision new genes. This year the Foundation also has a made by the National Ataxia Foundation’s strong focus on translational research that will Board of Directors. help facilitate the development of treatments for Funding for the most promising of these the Spinocerebellar ataxias. Because of the tremendous number of quality Continued on page 18 Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 18

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From the Desk... insure that the best research studies are funded. Continued from page 17 Their time commitment into this process is extensive and the value they bring is immeasur- studies will be considered in late December and able. those funded studies will begin January 1, 2012. Announcements and research summaries of Thank you also to our donors, without you the these funded studies will be available on NAF’s funding of these important world-wide studies website, www.ataxia.org, in early January 2012 would not occur. You are the catalyst in bringing and also in the spring 2012 issue of Generations. new knowledge to foster a better understanding At this time I would like to sincerely thank of the ataxias in the development of effective Harry T. Orr, Ph.D., NAF’s Research Director, treatments and ultimately a cure. who facilitates the research reviews, the Scien- Please help us further these efforts in funding tific Review Panel of Drs. Orr, Ranum, Schut, important ataxia research by supporting the NAF and Perlman, the NAF Medical Research Advi- Annual Ataxia Research Drive which begins in sory Board, and the scientific reviewers for October. Your support is essential and is greatly all their time, effort and expertise in helping to needed. Thank you.
Support NAF’s Travel Grant Program The National Ataxia Foundation’s Annual Mem- AMM experience possible for an individual in bership Meeting (AMM) is a special event that need. connects the ataxia community. In addition to Apply for a Travel Grant valuable presentations about ataxia research Individuals interested in the program are re- and therapy, the meeting has a large social com- quired to submit a Travel Grant application. ponent in which individuals with ataxia, their Adults or children with ataxia are eligible to apply family members, and caregivers for a travel grant. Applications will be accepted have the opportunity to interact until Jan. 26, 2012. Travel Grant applicants will with others who understand the not be notified of the status of their application challenges of ataxia. The meet- until after the application deadline when ing program is designed to foster all applications have been reviewed. learning, understanding, and con- Due to the generosity of groups and nection. individuals raising funds for this For those with ataxia, traveling to program a number of qualified appli- an Annual Membership Meeting can cations will be able to be funded be financially difficult. Our Travel this year. Visit the NAF website Grant program was created to assist www.ataxia.org to download the individuals with some of the costs as- application. If you would like an sociated with attending the AMM. Indi- application sent to you in the viduals interested in the program and mail, contact Lori Shogren at required to submit a Travel Grant application. (763) 553-0020 to request one. This application asks about the individual’s financial status, involvement in NAF programs, Travel Grant Experiences and interest in attending the event. “It gave me an opportunity to be part of NAF.” You can help an individual attend the AMM by “Thank you for providing me the opportunity making a donation to our Travel Grant Program to attend this year’s AMM. I am grateful.” today! Simply designate your donation to the “Many, many heartfelt thanks to all who do- AMM Travel Grant Fund to make an impact. We nated so I was financially able to attend this thank you for your support and for making the meeting, where I fit in. Thank you so much!” Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 19

Fall 2011 Generations Page 19 NAF Represented at the NINDS Forum to Advance Therapeutic Partnerships

The National Institute of Neurological During lunch, smaller networking groups were Disorders and Stroke (NINDS) recently hosted focused on six broad topics: Rare Disease its fifth nonprofit forum: “Partnering to Ad- Network, Multisystem Diseases, Benefits of vance Therapeutics for Neurological Disorders.” Building Nonprofit Alliances, Nuts and Bolts The meeting – attended by representatives from of Establishing a Nonprofit Agency/Selecting a 60 nonprofit organizations across the country – Scientific Advisory Board, Public-Private Part- gave patient advocacy groups an opportunity to nerships, and Working with FDA. Representa- learn from each other and about NIH and tives could talk directly with the NINDS NINDS, provided them with an environment to program staff who oversee the institute’s research share their interests, and allowed them to inter- portfolios as well as with their fellow patient act directly with program staff. The Forum was advocacy colleagues and NIH and FDA staff. held on June 1 at the Neuroscience Center “We all came together to learn and discuss how Building in Bethesda, Maryland. Representing we could work collaboratively to create a better the National Ataxia Foundation at this forum future for the patients we represent,” said Nat- was Jenean McKay, member of the Chesapeake acha Pires, director of Medical and Public Affairs Chapter of NAF, and Sue Hagen, Patient Serv- of the Neuropathy Association. “For some, this ices Director of NAF. was an opportunity to touch base and communi- NINDS Director Dr. Story Landis opened cate updates; for others it was the exciting first of with welcome remarks and an overview, “NIH many more conversations to come,” she said. 101: What It Is and Isn’t and How Council The afternoon was filled with case histories, Works,” which covered NIH’s mission and highlighting the accomplishments and experi- makeup, and NINDS funding basics. ences of three groups, and showing how collab- “Basic scientists think NIH is about enabling oration and coordination with NIH, other HHS them to discover exciting new facts about how agencies, industry, and Congress could lead to the brain works and how the heart works, and successful outcomes. people interested in diseases think NIH is about At the end of the day the nonprofit represen- learning about how to treat diseases,” said tatives gathered independent of NINDS staff to Dr. Landis. “But it’s the marriage of that basic talk with each other and brainstorm about work- science and the application of that basic science ing together. This session was also a first this year. that makes NIH unique.” “The NINDS Nonprofit Forum is a recogni- Participants discussed the National Center for tion and acceptance of the evolving role of Advancing Translational Sciences (NCATS), the patient advocacy groups as research partners in proposed new NIH institute scheduled to open the quest for better diagnostics and interventions later this year-and then split into parallel break- for rare diseases,” said Dr. Stephen Groft, direc- out sessions, led by panels of NINDS program tor of the NIH Office of Rare Disease Research. staff as well as nonprofit representatives. Topics Dr. Groft helped to lead one of the lunchtime dealt with peer review and priority setting, networking sessions. “It was an outstanding translational and preclinical science, resources for conference,” Groft said. “The interchange that patient registries and recruitment, and clinical occurs between staff and patient group leaders research. really is remarkable.”
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Accessible Home Design Working with a Specialized Architect By Ramesh Gulatee Ramesh Gulatee is a U.S. and Canadian registered architect who is NCARB certified and specializes in fully accessible, ADA-compliant designs for individuals with disabilities. He sits on the sustainability membership governing committee of the International Code Council (ICC) which sets building code for all design and construction in the United States. His firm, LifeCare Design Studio, LLC, is an Illinois-based architectural firm with across-USA certification. The firm’s team of architects and builders work together to design and build accessible environments. For more information on the LifeCare Design Studio visit www.lifecaredesign studio.com or contact Mr. Gulatee at [email protected], [email protected] or by phone at (847)522-8086 ext.211.

Building or remodeling a home takes careful What to Consider When Hiring consideration. An accessible home allows for an Architect optimal independent living. If you are consider- During an initial consultation with an ADA ing a building project that requires special design, architect, you will have the opportunity to learn an architect specializing in ADA (Americans about his or her design philosophy and style. with Disabilities Act) accessibility is your best You’ll need to discuss fees, timelines and expec- resource. tations, of course, but you will also have the An architect specializing in ADA accessibility chance to learn more about them as an individ- has training and experience designing specifically ual and as a professional. for people with special needs. Working with an Here are some great questions to start with: ADA architect will give you the opportunity to • Why did you decide to specialize in residen- share information about your or a loved one’s tial ADA architecture? A great question to open disability and the obstructions to barrier-free with because it invites the architect to talk about living within your current home. his or her passion and motivations to work with You can provide your own preferences and people who have disabilities. This question also ideas about the modifications you will need. This allows you to follow-up with your own hopes gives the architect a starting point in which to and dreams for the home. design comprehensive accessibility solutions. • What is your availability? How will you Architects designing residential housing are address a client’s concerns and requests? Even if concerned with aspects of human functions such an architect has a great design philosophy and as sleeping, watching TV, bathing, cooking, and impressive portfolio, if he or she is insensitive to so forth. An architect experienced in barrier-free your family’s needs or hard to reach, then they design will identify design issues appropriate for may not be the right person for the job. a home environment that may be overlooked by • What percent of your projects come in under general architects. For example a general archi- budget and on schedule? A good architect should tect may only be somewhat familiar with ADA be able to ensure that there are very few surprises accessibility issues, or may be familiar with ADA or delays and that the project is designed within compliancy used in other building types such as the allocated budget and adheres to an agreed offices, retail stores, or industrial buildings, but upon schedule. not in a home environment. • What is your involvement (if any) during  Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 21

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the construction phase? Get a feel for how • Optimized light, power and phone locations involved the architect is during this phase. You • Selection of appropriate appliances, fixtures may hire an architect to draw-up the plans that and hardware (i.e. faucets/door levers) your contractor will implement independently. • Usage of maintenance-free materials Or you may want the architect to work with the You’re Hired contractor from the start to finish of the project. Once you’ve decided to hire your ADA archi- This preference may depend on tect, ask them to prepare an Amer- your project. ican Institute of Architects (AIA) • Can you show me past design professional services contract. It work? The portfolio should in- details your and the architect’s clude photos and drawings and responsibilities for the project. It is may include testimonials from a good idea to have an attorney re- past clients. Ask about the projects view the contract for modifications that look similar to yours. Feel free of conditions that are pertinent to to contact the architect’s previous the scope of professional services. clients for more information. Some key conditions that should Good Design is Easy to Spot be addressed include: Look for accessibility solutions • The scope of work is defined tailored to the previous client’s disability when in sufficient detail reviewing an ADA architect’s past design work. • A complete project development phase Feel free to ask specific questions about the proj- (design) schedule is included ect and invite the architect to elaborate on the • The fee payment schedule is tied to project previous client’s project and what considerations phases and progress is clear went into the design. Universal accessibility • Project delivery and architect involvement designs may include: (design, design build, construction management) • Ease of window operability is clearly spelled out and understood

Seeking Volunteers for Multiple System Atrophy Research Study Study Title: An Oligo-centered, Randomized, whether Rifampicin is effective in slowing or Double-blind, Placebo-controlled Clinical Trial to reversing the progression of MSA. Research Assess the Efficacy, Safety, and Tolerability of studies indicate that there is an abnormality Rifampicin in Patients with Multiple System in protein synthesis and structure in parts of Atrophy the brain responsible for MSA and the drug Several research sites across the United Rifampicin could potentially prevent or reverse States are currently enrolling participants for a this protein alteration. major study funded by the National Institutes of Only patients diagnosed with Multiple Health to determine the effects of Rifampicin System Atrophy-Parkinsonian or Cerebellar (also known as Rifampin) in people with Multiple subtype (MSA-P/C) are being recruited. System Atrophy of the parkinsonian and cere- For more information, please contact Tonette bellar subtypes (MSA-P/C). Gehrking at (507) 284-0336 or email adc. The purpose of this study is to determine [email protected]. Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 22

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The National Ataxia Foundation 55th Annual Membership Meeting “Roundin’ Up a Cure to Give Ataxia the Boot”

San Antonio,TX – March 16 -18, 2012

You are invited to attend the National Ataxia is for anyone interested in learning more about Foundation’s 55th Annual Membership Meet- doing a fundraiser to support the important work ing in San Antonio, TX. The meeting will be of the National Ataxia Foundation. held March 16-18, 2012 at the Grand Hyatt San NEW! AIM Poster Session (5:15 - 6:15 p.m.) Antonio Hotel. The meeting is hosted by the – This session is an opportunity for you to view NAF Board of Directors and the NAF Texas the posters presented at the fourth NAF Ataxia Ataxia Support Groups. The meeting will also Investigators Meeting. Poster presenters will be celebrate NAF’s 55th anniversary in serving available to answer questions about their posters ataxia families. and research projects. The Annual Membership Meeting Registra- Friday, March 16 tion Form will be available in the Winter General Sessions (8:30 a.m. - noon) – Friday 2011/2012 issue of Generations and on NAF’s morning will start the General Sessions in the website in January 2012. The latest information Lone Star A-C Ballroom. Many of the world’s available about the meeting will be posted on leading ataxia researchers and clinicians, along NAF’s website, www.ataxia.org. with other ataxia experts, will present the latest Meeting Overview and Schedule ataxia research. These sessions will also include Thursday, March 15 presentations about ataxia management. A 30- Registration Room Open (9 a.m. - 8 p.m.) – Visit minute question-and-answer session with the the registration room to pick-up your conference morning’s speakers will take place after the pre- program, welcome bag, name badge, banquet sentations. tickets and conference T-shirt. If you are bring- Birds of a Feather (2 - 5 p.m.) – Attendees will ing an item to donate to the Silent Auction, have the opportunity to attend small group you may drop it off in the registration room. The sessions based on their type of ataxia, or role in registration room will be open throughout the the life of a person with ataxia (i.e., caregiver, conference. Registration room hours will be spouse, or parent). This is a great opportunity to printed in your meeting program and posted meet others who share your situation or ataxia outside the room. diagnosis. Previous attendees have said that these Exhibitors (10 a.m. - 8 p.m.) – Exhibitors have group sessions were the most valuable segment the opportunity to staff booths from Thursday of the Annual Membership Meeting. Medical through Sunday as their schedules permit. If you professionals will be circulating between groups would like to recommend an exhibitor or if you and available for questions. are interested in exhibiting please contact Liz Texas BBQ Hors D’Oeuvre Welcome Reception Werner of the NAF staff at [email protected]. (7 p.m.) – All registered attendees are welcome Fundraising Meeting (4 - 5 p.m.) – This meeting to attend this “TexasStyle” welcome reception. Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 23

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Admittance to this event and the snack food pro- person planning to attend the daily sessions, vided is included with your meeting registration reception, or banquet needs to register. There fee. A cash bar will be available and attendees are will be an additional charge for registrations encouraged to dress up in cowboy attire. received after February 15, 2012. Registration Saturday, March 17 after March 1, 2012 will only be accepted on-site General Sessions (8:30 a.m.) – General Sessions at the conference. continue all day and will include a 30-minute About San Antonio question-and-answer session following the For information about the city of San Antonio, presentations. visit www.VisitSanAntonio.com. Church Services (6 p.m.) – Catholic and non- denominational church services will be held on About the Grand Hyatt San Antonio Saturday for those who wish to attend. The Grand Hyatt San Antonio is located Silent Auction – The Silent Auction will begin nine miles from the San Antonio International Saturday afternoon with the final bidding end- Airport (SAT) in the heart of downtown San ing at 7 p.m. (NEW TIME). Auction items Antonio at 600 E. Market St., San Antonio, TX range from art work, sports memorabilia, theme 78205. baskets, hand-crafted items, hotel stays, weekend getaways, and more. Bring an item to donate and Room Reservations then have fun bidding on the items of your Guest room reservations are available at the choice. Grand Hyatt San Antonio for a special group rate St. Patrick’s Day Banquet (7 p.m.) – All regis- of $139 per night. To book your stay online visit tered attendees are invited to attend the banquet. https://resweb.passkey.com/go/NationalAtaxia. If You can pick-up your banquet tickets, arrange for you prefer to make your reservations by phone your seating, and verify your entrée choice at call 1-888-421-1234 and ask for the National the banquet ticket table. The event will include Ataxia Foundation Conference special rate. If a plated dinner and entertainment. Attendees are you need ADA equipment, be sure to mention it encouraged to wear green. when making your room reservation. Shower Sunday, March 18 chairs, tub bars, toilet frames, and detachable General Sessions (8:30 a.m. - 1 p.m.) – The shower heads will be available on a first-come, meeting will conclude with General Sessions first-serve basis by contacting the Grand Hyatt followed by a 30-minute question-and-answer front desk upon check-in. session with the day’s presenters. The Grand Hyatt San Antonio is within walk- ing distance to other hotels. If you are unable to Additional Information get a guest room at the Grand Hyatt you may Conference Registration – The AMM registra- wish to contact a reservations manager at the tion form will be available on NAF’s website other hotels that are nearby. Some nearby hotels January 2012 and in the Winter 2011/2012 issue include Marriott Riverwalk, Marriott River- of Generations. center, La Quinta Inn & Suites Convention Registration Fees – Members of the National Center, Best Western Sunset Suites Riverwalk, Ataxia Foundation can register for the confer- Hilton Palacio del Rio, Fairfield Inn & ence using a special member rate. To inquire Suites San Antonio Downtown/Alamo Plaza, about the status of your membership, or to Springhill Suites San Antonio Downtown/ become a member, please visit www.ataxia.org or call the NAF office at (763) 553-0020. Every Continued on page 24 Gen_1103_13-24.qxp:Layout 1 9/22/11 9:42 AM Page 24

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Annual Meeting Preview To make this request you will need to type “ADA Continued from page 23 Required” in the comments section provided on the reservation website. Hyatt-Grand is the Alamo Plaza, Residence Inn Alamo Plaza, selection you will want to make if staying at the Comfort Suites Alamo/Riverwalk, Red Roof conference hotel, not Hyatt-Riverwalk. Inn Downtown, Emily Morgan Hotel, and Taxis from SAT Airport – For a list of taxi Hampton Inn San Antonio Downtown. cab companies please visit www.sanantonio.gov/ Some nights in the NAF room block are Aviation/taxicabs.asp or visit San Antonio Wheel- currently sold out. Be sure and search the nights chair taxi, sanantoniowheelchairtaxi.com or (210) individually and book the ones that are available 260-6740. when booking either online or talking with Public Buses and Street Car Service –VIA a reservationist by phone. Cancellations may Metropolitan Transit is San Antonio’s public occur. Keep checking the reservation website for transportation agency offering service through- availability. out the city. For information visit www.via To inquire about the availability of an ADA info.net or call 1-866-362-2020. Accessible room at the Grand Hyatt San Antonio Hotel you services provided by VIA can be found at MUST contact Lori at the National Ataxia www.viainfo.net/AccessibleService/AccessibleService Foundation at (763) 553-0020 or [email protected]. Main.aspx.

Parking San Antonio Area The Grand Hyatt San Antonio has extended Services and Resources a discounted parking rate of $10 per day for Wheelchair and Scooter Rentals and Repair: our conference attendees for self parking and overnight attendees. NAF does not have a group Tom’s Wheelchair Rental – (210) 223-7878 rate for valet parking. The parking ramp has a www.tomswheelchairs.com height restriction of 6' 8". Ability Scooters – (210) 315-8242 www.abilityscooters.com/wheelchair-rental.html Transportation and Getting There Scootaround – 1-888-441-7575 Attendees are responsible for transportation to www.scootaround.com and from the conference. The following infor- Personal Care Attendants: mation and links may help you plan for your transportation needs at the meeting: Please note that NAF is unable to provide care attendant services. Due to liabilities and health Transportation Security Administration (TSA) – concerns, NAF and hotel employees are not able Travelers with Disabilities and Medical Condi- to provide this service. Please do not attend with- tions page can be found at www.tsa.gov/travelers/ out making arrangements for an attendant if you airtravel/special needs/index.shtm. need one. The following information may be San Antonio International Airport (SAT) – helpful in this planning: www.sanantonio.gov/Aviation. GO Airport Shuttle – San Antonio’s official air- The Attendant Network port shuttle provider. NAF’s group rate is $17 www.dars.state.tx.us/services/personalattendants. one way and $30 round trip per person. To make shtml
a reservation please visit NAF’s group reserva- tion website http://saairportshuttle.hudsonltd.net/ An expanded version of this article is avail- res?USERIDENTRY=NAF&LOGON=GO. able on the NAF website, www.ataxia.org. ADA compliant vehicles are available by request. Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 25

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The NAF Board of Directors along with the Central Texas, Houston, and North Texas Ataxia Support Groups would like to invite you to attend the National Ataxia Foundation 55th Annual Membership Meeting March16-18, 2012 Join us in San Antonio where we’ll be “Roundin’ Up a Cure to Give Ataxia the Boot”

Early Registration opens at the end of December 2011 and runs until mid-February. To take advantage of the discounted room rate of $139 per night at the Grand Hyatt San Antonio, visit https://resweb.passkey.com/go/NationalAtaxia or call 1-888-421-1442. For all ADA room reservations you must contact the National Ataxia Foundation at (763) 553-0020 and ask for Lori, or e-mail her at [email protected]. For the latest information on conference registration, schedules, and area information, keep checking NAF’s website, www.ataxia.org. For more information about San Antonio, visit www.visitsanantonio.com/meeting.

We look forward to seeing you in San Antonio! Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 26

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Meeting with FDA’s Center for Devices and Radiological Health By Carolyn Davis, President of NAF Chesapeake Chapter The National Organization for Rare Disorders unreasonable risks, or at least the probable ben- (NORD) is a federation of voluntary health or- efits should outweigh the risks. HDEs provide a ganizations to help people with rare diseases powerful incentive for manufacturers to develop and to assist the organizations that serve them. devices that help diagnose or treat patients with In June NORD hosted a meeting between repre- rare conditions. sentatives of several of these organizations and As CDRH regulates diagnostic tests, they work the director and senior staff of the Center for with the Center for Drugs at FDA. Diagnostics Devices and Radiological Health (CDRH) in the approval generally takes less than the eight to Food and Drug Administration (FDA). 10 years it takes for therapeutic drug approval. CDRH regulates all genetic testing, diagnostic Major pharmaceutical companies have person- procedures, and medical devices. This spring alized medicine groups to identify biomarkers they launched an “Innovation Initiative” to en- that can be targeted by therapeutic drugs. This courage development of devices and to improve highlights the need for diagnostic tests early in medical diagnostic and therapeutic tools. drug development. The three classes of regulatory control of CDRH would like to increase the input from medical devices are based on the degree of patients, which is currently limited, by holding regulatory control necessary to ensure their periodic forums for patient groups and/or with safety and effectiveness. formal surveys conducted by outside groups. • About 50 percent of medical devices, those Currently the only options for public input are with the lowest risk, are Class I devices and through public meetings as advertised in the require no review prior to marketing as long as Federal Register and through advisory commit- appropriate labeling and quality systems are in tees. In addition they want to increase post- place. market input from patients. Post-approval stud- • Class II devices are more complicated and ies can evaluate device performance and require special controls for labeling, guidance, potential problems when the device is used more widely than in clinical trials and over a tracking, design, performance standards, and longer period of time. An established network of post-market monitoring. This pre-market 510(k) patients facilitates both pre-market and post- program covers lower-risk devices that are market studies, as well as usability testing. substantially equivalent to other devices on the market and face a streamlined review process. Patient groups can provide the following assistance: • About 10 percent of medical devices require studies for safety and effectiveness before • Identify needs and take them to the manu- pre-market approval. Class III devices usually facturers and pharmaceutical companies, sustain or support life, are implanted, or demonstrating there is a market. present potential unreasonable risk of illness or • Say it often and say it loud – to manufactur- injury. ers, pharmaceuticals, FDA, and Congress. A Humanitarian Device Exemption (HDE) is • Provide a network of patients for pre-market available for a device likely to be effective but and post-approval testing across a spectrum of whose effectiveness has not yet been demon- users. strated. It is intended to benefit patients by • Provide post-market input to manufacturers treating or diagnosing a disease or condition and FDA through MedWatch reporting. that affects fewer than 4,000 individuals in • Participate in advisory panels. the United States per year. They must pose no • Provide information to patients. Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 27

Fall 2011 Generations Page 27 Understanding Clinical Trials Who are the members of the clinical research team? Research involves a lot of people. Like mem- while the Food and Drug Administration re- bers of a sports team, clinical trials have coaches, views studies, inspects research centers, monitors officials and players and each person has an research groups and decides whether a treatment important role to play. will be approved. Both the OHRP and the FDA The Principal Investigator (PI) is like the head can shut a study down if they feel it is too risky. coach of a team. He or she is responsible for But by far the most important members of organizing the study, recording and studying the the team are the research volunteers. Volunteers data and directing the team. Like a head coach, are like the players on the field. Without them, the principal investigator follows a play book, research can’t happen. Just like on a sports team which is called the study “protocol.” The proto- which needs players with a range of talents, a col is a set of instructions that everyone in the clinical trial needs all sorts of volunteers. Demo- game must follow. graphics – things like gender, age, race and eth- The research staff members are like assistant nic background – affect the way people respond coaches who help the Principal Investigator. The to diseases and treatments. Because of these Clinical Research Coordinator or CRC handles differences, scientists need to observe many the day-to-day activity at the research site. He or different types of people – including healthy she has easy access to the principal investigator volunteers – to understand how a treatment and is the main contact for volunteers. affects them. Referees help protect the safety of volunteers This article has been reprinted with permission by making sure teams follow the rules. The from the “Medical Heroes Newsletter” published number and type of referees involved in a trial by Center for Information and Study on Clinical depends on the research being conducted. Research Participation (CISCRP), a nonprofit Every clinical trial is reviewed, approved and organization dedicated to educating and informing the watched over by an independent local committee public, patients, medical/research communities, the called an Institutional Review Board or IRB, media, and policy makers about clinical research and the role each party plays in the process. For more which makes sure a trial is ethical and fair and information about this organization you may visit that volunteers are not exposed to too much risk. their website at www.ciscrp.org. O An IRB can end a trial if it feels volunteers are not safe. Some trials, especially ones studying serious or deadly conditions, are also overseen by a Data GoodSearch Safety Monitoring Board or DSMB. DSMBs Did you know that using GoodSearch for are independent committees of community Internet searches provides donations to representatives and research experts who make NAF? sure the research is valuable and patients aren’t GoodSearch recently added online shop- exposed to unnecessary risk. ping to their site, with a donation made to the National Ataxia Foundation with every Referees from the federal government are also purchase. involved. The Office of Human Research Pro- Visit www.goodsearch.com today to see tections or “OHRP” helps protect volunteers how easy it is to start making a difference. participating in government sponsored research, Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 28

NAF Merc BOOKS

— ATAXIA RESOURCES — — FICTION & PERSONAL STORIES — Evaluation and Management of Summer Born: A Life with Cerebellar Ataxia Ataxic Disorders for Physicians By Cheryl Wedesweiler by Susan Perlman, M.D. Although the characters are fictional, the story is This resource is intended to inform and guide physi- based on the author’s real life experiences with cians who may be caring for patients with ataxic having cerebellar ataxia. $15.95 symptoms or who have been diagnosed with ataxia. Ten Years to Live It will provide health care practitioners with a vocab- ulary to aid in the understanding of what is and is by Henry J. Schut not ataxia, diagnostic protocols for use in defining The story of the Schut’s family struggle with heredi- the types and causes of ataxia and resources for tary ataxia and the impact it had on this extended use in counseling and managing the ataxic patient. family. It is dedicated to the author’s brother,Dr. John Consider buying one for your neurologist and other W. Schut, who was committed to the cause of finding health care providers. Published in 2007. $5 a cure for ataxia, which claimed his life. $8.75 Healing Wounded Doctor-Patient Relationships There’s Nothing Wrong with Asking by Linda Hanner with contributions by John J. Witek, for a Little Help … and Other Myths M.D. and doctors and patients around the nation by Dave Lewis This book is packed with information that anyone The story about one man’s experiences in living with who ever goes to a doctor for any reason deserves Friedreich’s ataxia. Dave spent the last three years of to know and that every professional who wants to his life writing his memoir to provide information and maximize his or her healing power must understand. inspiration to countless others. Proceeds from the $10 book purchased through NAF will be used to support promising Friedreich’s ataxia research. $15.95 Living with Ataxia: An Information and Resource Guide — COOKBOOKS — by Martha Nance, M.D. Recipes and Recollections This illustrated book provides a by Kathryn Hoefer Smith compassionate, easy to under- Dedicated to the memory of her daughters who had stand explanation of ataxia with Friedreich’s ataxia, Kathryn Hoefer Smith has taken ideas on how to live well with the handwritten cookbook her mother-in-law made for ataxia. It is an excellent tool for her sons and their families and duplicated it in 2003. building awareness for those who It is full of delicious recipes and recollections. Perfect do not know what ataxia is or how it affects a person for FRDA research fundraisers. $10 who has ataxia. This second edition was published in 2003. $14 Cooking for a Cause by Julie Karjalahti for FRDA research Managing Speech and Swallowing Problems: This 177-page cookbook has kid’s recipes, fun craft A Guidebook for People with Ataxia recipes, along with the usual desserts, breads, bev- by G.N. Rangamani, Ph.D. with erages and other recipes you would expect from a contributions from Douglas E. Fox, M.S. good cookbook. $12 This 60-page booklet is an excellent resource for those who struggle with speech and/or swallowing problems. It is an easy to understand booklet with Recordings of presentations from the 2011 Annual straight-forward and realistic suggestions for speech Membership Meeting are now available to order. and swallowing management. This second edition Please call (763) 553-0020 for more information. was updated in 2006. $7.50 Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 29 chandise SHIRTS/MISCELLANEOUS

International Ataxia Awareness Day T-Shirt Window Cling or Bumper Sticker Available in youth L, and adult small to XXX-large. $10 $1 ea. or 6 for $5 2011 Annual Membership Meeting T-Shirt NAF Ataxia Awareness Band Blue Gray, short-sleeved with the “Bringing the Ataxia One size. $2 World Together” logo. Sizes medium to XX-large. $10 NAF Ataxia Awareness Ribbon Magnet NAF Shoulder Bag Blue with white lettering/logo. $4 Blue with white NAF logo. 11x15x2 inches. $10 Reusable Grocery Bag with NAF Logo NAF Polo Shirts $5 Mens – Royal blue w/white embroidered NAF logo. Sizes medium to XXX-large. Womens – Light blue w/ navy embroidered NAF logo. Sizes small to XX-large. VIDEO/CD $25 Ballads of a Family Man CD NAF Denim Shirt 10 songs in memory of Billa Ballard. $5 of purchase Denim with white embroidered NAF logo. $27.50 price goes to support the work of the NAF. $13 “Ataxia is Not a Foreign Cab” T-Shirt “Together There is Understanding” VHS or DVD White. New design. A discussion of ataxia. 50 minutes. VHS $20 or DVD Sizes small to XXX- $25 large. $10 “Ataxia is Not a Foreign Cab” To order, call (763) 553-0020, Sweatshirt fax (763) 553-0167 or mail this form to White. Sizes small to National Ataxia Foundation, 2600 Fernbrook Lane, XXX-large. $20 Suite 119, Minneapolis, MN 55447

ORDERFORM

Description Qty. Size Each Total NAME: ______

______ADDRESS: ______CITY______STATE: ____ ZIP: ______PHONE: ______E-MAIL: ______For credit card orders, please fill out the following information (you must include phone number and signature): SUBTOTAL: ______PLEASE CIRCLE ONE: Visa Mastercard Discover Shipping within U.S.: Add $5.00 NAME ON CARD: ______Shipping outside U.S.: Add $15.00 CARD #: ______ORDER TOTAL: ______EXP DATE: ______CVV #: ______PLEASE ALLOW 4-6 WEEKS FOR DELIVERY SIGNATURE: ______Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 30

Page 30 Generations Fall 2011 Caregiver’s Corner NAF has permission to reprint the following excerpts from the “Comfort of Home” series. Bullies/Dealing with Difficult People Some people are born complainers. If the and other dementias need to see a doctor as soon person in your care has always been difficult to as possible. If the person is developing dementia, get along with, age isn’t going to improve him or new drugs can help ward off the worst personal- her. A sudden change in personality, from sweet- ity changes (in some people) for months or even tempered to angry all the time, however, may be years. Antianxiety medications and, for some, a red flag for other problems such as: antipsychotics, can make a difference. Medication effects. Some medications can Abusive personality. Unfortunately, a lot of cause personality changes in some people. Drug adults grew up in families where they were interactions can also cause problems, so always abused, physically and/or emotionally, all of their have drug combinations checked by a pharma- lives. Just because they have grown old doesn’t cist. Antidepressants are a big cause of personal- mean family relations will change for the better. ity changes; the wrong drug can make depression It’s likely that these abusive elders will be just as worse. Don’t assume things will get better; abusive to their adult children (and their care- talk to a doctor right away. Many elders with givers!) as they were when they were younger. dementia symptoms are sometimes suffering from drug interactions; once the drugs are gone, Handling Angry Outbursts or the dementia disappears! Uncooperative Behavior Infections. “Silent” infections, especially To diffuse anger, try: bladder or urinary tract infections (UTIs) can • Humor: Make light of the situation, but not affect emotions and personality, even when the the person. person doesn’t seem sick. • Empathy: “I see how upset you are and I Pain. If you see a sudden change from sunny to understand.” irritable complainer, have a doctor check for • Changing the subject: Address what he is painful health conditions. Many elders “don’t saying briefly, then move on to a different topic. want to complain” to a doctor, so they complain • Taking a break: Tell the person you have a to their caregivers all day long. task to take care of in another room and that Attitude. Some people believe that age gives you’ll discuss the issue in a little while. This will them the right to say whatever they feel – and give him time to cool down and you a chance to much of this could be negative if they are bored take some deep breaths to get centered again. or feeling unneeded. If the person in your care can be made to understand what he is doing, he When the Person Refuses to Cooperate may be able to change. First, make sure he understands what you are Dementia. Memory issues are what we gen- asking. He may be confused, especially in cases erally think of in dementia. However, frustration, of dementia, or he may be feeling ill and is getting lost, or not being able to do or recognize simply unable to respond quickly. familiar things can cause startling personality • Make sure he is comfortable: He may be changes. People with Alzheimer’s, Pick’s disease confused, overstimulated, or in physical pain.  Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 31

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• Listen: Ask him how he is doing. Some- because of his disease. times combative behavior is a symptom of a Taking Care of Yourself – Anger and deeper issue. For example, a person may refuse Depression Increase Pain to be bathed because of embarrassment. Or, he may refuse to eat because he feels has no control Anger and sadness hurt. Scientists found that over his life. Giving the person choices can make when people are angry or sad, they feel more him more likely to cooperate. pain. • Be patient: Your schedule may be over- If you, or the person in your care is in pain, whelming, but the person in your care is on his depression or anger can make her feel even own schedule. Allow more time than usual for worse. Many people, especially elders, tend to simple tasks. Too many activities at once can hide negative emotions, but keeping sadness or provoke a reaction because the person feels irritation inside can make painful conditions overwhelmed. worse. Recognize your emotions and express • Remain calm: Seeing you calm may help them in a healthy way that makes you feel better. calm him down. It’s normal for a person to be upset or depressed • Delay personal care if possible: Ask your- when not feeling well, but in some cases self if the task you are attempting can be put off improving mood can make pain less intense. until the person is calmer. Learning new ways to cope with sadness and • Do not contradict his reality: If he be- anger can help a person cope better with illness lieves something to be true, do not disagree, and pain—and caregiving. unless it poses a physical threat. Source: WebMD • Track the behavior: Keep notes on times of day, frequency, or type of behavior HALT problem. Never let yourself get too Hungry, Changing What You Do too Angry, too Lonely or too Tired. You may not be able to control the other person’s behavior, but you can control your Don’t Fall – Be Safe own. Here’s how to appear less confrontational Be aware that sedatives, anti-depressants, and to the person who is agitated: anti-psychotic drugs can contribute to falls by • Stand beside him or at eye level rather than reducing mental alertness, worsening balance towering over him, especially if several people are and gait, and causing drops in systolic blood pres- tending to him at once. sure while standing. Additionally, people taking • Don’t expect an immediate answer or multiple medications are at even greater risk of response. Give him extra time. falling. • Keep the room calm. Turn off the TV and When Hostility Builds to a Breaking radio. Point • Speak clearly and slowly. Control your emotions by releasing anger and Don’t Take It Personally frustration in a safe way. Take a walk to cool Sometimes a person’s abusive behavior is a down, or go to a private corner and unleash your symptom of illness or dementia and is not his anger on a big pillow. true nature. Remember, he may not be able to control his behavior or even be aware of it Continued on page 32 Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 32

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Caregiver’s Corner 2. “Silent” infections, especially bladder or uri- Continued from page 31 nary tract infections (UTIs) can affect emotions and personality, even when the person doesn’t To find professional help or support-group seem sick. TF counseling, check out: 3. Memory issues are what we generally think • The community pages of the phone direc- of in dementia. However, frustration, getting tory lost, or not being able to do or recognize famil- • The local county medical society, which can iar things can cause startling personality changes. provide a list of counselors, psychologists, and TF psychiatrists 4. When handling an angry outburst, making • Religious service agencies light of the person helps. TF • Community health clinics 5. When the person refuses to cooperate, first • Clergy make sure he understands what you are asking. • Area Agency on Aging TF • United Way’s “First Call for Help” 6. Sometimes combative behavior is a symp- • A hospital’s social service department tom of a deeper issue. TF • A newspaper calendar listing of support 7. Too many activities at once can provoke a group meetings reaction because the person feels overwhelmed. • Parish nurses TF • Counselors familiar with the needs of care- 8. In some cases, improving mood can make givers. pain less intense. TF 9. A sudden change in personality may be a red Quick Quiz flag for other problems. TF With age or because of illness, personality 10. Giving a person choices will not make him changes can be intense and difficult for the per- or her any more likely to cooperate. TF son in your care, family members, and caregivers. Key: 1. T; 2. T; 3. T; 4. F; 5. T; 6. T; 7. T; 8. There is no guarantee that the personality T; 9. T; 10. F changes will go away. Read the issue and answer True or False to the questions below to test your ©2011 CareTrust Publications LLC. All rights knowledge. reserved. Reproduction of any component of this 1. Some medications can cause personality publication is forbidden without a license from the changes in some people. TF publisher.
IRA Provision Extended In December 2010, the United States Con- This IRA transfer must be done by December gress extended the “IRA charitable rollover” pro- 31, 2011. vision that allows people who are 70½ years or While there is no charitable deduction for an older to use their taxable individual retirement IRA charitable rollover, the gift counts toward (IRA) funds to make a donation to qualified char- required minimum withdrawal requirements and ities, like the National Ataxia Foundation. is not counted in taxable income. You may choose to make a gift in any amount Please contact your financial advisor to see up to $100,000 from your Traditional or Roth how the charitable IRA rollover provisions might IRA and donate it tax-free to the Foundation. affect your situation before giving. Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 33

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permanently handicapped individuals can get Central New York Support Group Update a lifetime free pass to all federal parks at any By Mary Jane Damiano and Judy Tarrants National Park Ranger Station. Our group met April 2 with 11 members Our next Support Group meeting is Oct. 15 enjoying snacks and socializing first. Our guest at 1 p.m. was Kevin Kensey who spoke about and demon- strated the Dynavox, a very useful computer for West Central Florida Ataxia Support those with speech difficulties. It can also help Group Update with many other activities that are a problem for By Cathy Kirchner ataxia patients. Our member traveling the far- thest to attend was Ron Gladstone, who came The West Central Florida Ataxia Support from Trumansburg, NY, with his son John. Group under the leadership of President Cindy Steever-Ziegler has had two recent meetings On Aug. 16 we met again with 13 members with guest speakers presenting on various present to enjoy a presentation by Rob Reese of topics. On May 7, Cathy Kirchner, the spouse Brewerton Pharmacy and Home Care about the of a group member and a licensed mental health many new adaptive items available to assist those counselor, provided information on the cogni- with physical challenges. Rob is working at tive and affective effects of ataxia. She reviewed present with Mary Jane to help replace her wheelchair but he and his company can also pro- information provided at prior annual confer- vide a large selection of other helpful equipment. ences by Jeremy Schmahmann, MD on this topic as well as some general strategies for For questions or other information contact ataxians and their loved ones to improve coping Judy Tarrants at (315) 683-9486 or jtarrants@ with those issues. aol.com or write to 7778 Academy St., Fabius, NY 13063. On July 7, Cheryl A. Paul, MS, CCC-SLP, a clinical instructor in the communication disor- ders department at the University of South Denver Ataxia Support Group Update Florida (USF), presented an overview of how By Charlotte DePew various types of ataxia impact language, speech, Our April meeting had over 40 attendees. We and swallowing. She provided excellent and discussed a report of things learned at the 2011 detailed recommendations of resources available Annual Membership Meeting in Los Angeles. to address those issues, strategies for seeking a Volunteers for our first fund and awareness speech pathologist, as well as some basic strate- raising event in September were added to the gies an ataxian and their loved ones can use to current committee. Enthusiasm was high. improve communication. She also provided The July 16 meeting’s attendance was lighter information about services available at the USF than usual with three new families attending. We clinic that could be helpful for ataxians. Our had our usual round of introductions and sharing. Amy Cantrell told the group that Continued on page 34 Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 34

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Chapter and Support Group News bers and guests in attendance. Members traveled Continued from page 33 from Sacramento, Carmel and numerous cities throughout the Bay Area. The meeting began November meeting will be our Thanksgiving with introductions. Each person shared where dinner on Nov. 5 at a location to be determined. they were from and what type of ataxia they are dealing with. Mike Fernandes was recognized Greater Atlanta Ataxia Support Group for serving as the leader for our support group. Update Although he has passed the baton to Joanne By Greg Rooks Loveland, we still look forward to his participa- The Greater Atlanta Ataxia Support Group tion at our meetings – thanks Mike! met on May 21 at Emory University. We had Dr. Gail Kang from UCSF was our guest our largest attendance ever at this meeting. speaker. She gave an informative talk about Approximately 40 people were in attendance, “The Promising Therapies on the Horizon for and for many this was their first meeting. Dr. Ataxia.” Dr. Kang spoke about four types of George “Chip” Wilmot was our speaker giving therapies. She discussed cell types in the cere- us a summary of presentations from the NAF bellum and explained that Purkinje cells are the Annual Membership Meeting in Los Angeles. most abundant cells in the cerebellum. Dr. Kang discussed the different types of stem cell thera- pies. Protein modification combined with stem cells could move us toward a cure. Dr. Kang encouraged those who have SCA 1, 2, 3 and 6 to sign up for the Natural History Study. UCSF is now part of the National Ataxia Consortium which is a needed medical resource for ataxians The Greater Atlanta Ataxia Support Group. in Northern California. It was a great presenta- On June 5 our support group had a picnic out- tion – thank you Dr. Kang! ing at Lanier Lake. About 40 members showed Our next meeting will be Oct. 8 at the same up to enjoy each other’s company and some time and place. good food. It was a great day. Our support group met again on July 16 at Greater Cincinnati Area Ataxia Support Emory University with approximately 20 mem- Group Update bers in attendance. We did not have an outside By Jennifer Mueller speaker but enjoyed discussing various topics among each other. Our meeting on Aug. 20 was held at a branch of the Cincinnati Public Library. Our co- Our next regular meeting is scheduled for support group leader Julia Soriano was able to Nov. 5 and our annual holiday party will be held arrange for the founder of the Standing Com- on Dec. 10. pany to speak with us and demonstrate two different models of standing wheelchairs. One Northern California Ataxia Support was a manual standing wheelchair, and the other Group Update was a half-power standing wheelchair. The latter By Joanne Loveland is a model that is powered by electricity to move, The Northern California Ataxia Support but it has the added feature of also being a stand- Group (NCASG) met on July 9 at Our Savior’s ing wheelchair. If you have not seen these prod- Lutheran Church in Lafayette. We had 45 mem- ucts, it will be worth your while to check  Gen_1103_25-36.qxp:Layout 1 9/15/11 2:32 PM Page 35

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the company out and perhaps have a representa- Registry and the NIH Rare Disease Clinical tive come to your support group to demonstrate. Network (RDCRN) for studies in SCA 1, 2, 3 He explained that two of the benefits of standing and 6 are examples of such collaboration. He also are health and independence. Health improves mentioned a recent trip to China by several for wheelchair users who use a standing wheel- ataxia investigators from the United States in an chair by eliminating urinary tract infections, attempt to foster truly international collabora- pneumonia, and decubitus ulcers. It also tion. He strongly encouraged all members to improves contractures and bone mass, as well as register on the National Ataxia Registry and possibly preventing osteoporosis and lengthen- mentioned that within the next few months ing tendons and muscles. Please check out this the consent process for the registry will become amazing company at www.thestandingcompany. simpler. Currently he is looking for additional com or by calling 1-800-STANDING. subjects with SCA 1, 2, 3 and 6 for the natural history study and for several other studies on- going at the University of Florida, including Northeast Florida Ataxia Support Group research in Friedreich’s ataxia. In closing he Update answered several questions from the members By McGready Kelso and visitors. The Northeast Florida Ataxia Support Group had another excellent meeting at Baptist Hospi- tal South. Our meeting was held Aug. 13 with 36 members and visitors in attendance. Steve Brown introduced guest speaker Dr. Subramony, internationally known to the ataxia community for his cutting-edge research and locally known to many of our members as their neurologist. His The Northeast Florida Ataxia Support Group. presentation topic was “Moving Ataxia Research After the meeting, all members of the group Forward.” and visitors were invited to Applebee’s to talk Dr. Subramony briefly went over some of the and enjoy the company of new and old friends, basic research done in the past, including animal family and significant others. Our next meeting studies that are paving the way towards real neu- will be held Saturday Nov. 12, at 1:30 at Baptist roprotective treatment of ataxias such as switch- Hospital South. ing the mutated gene off in some of the SCA’s and replacing frataxin in Friedreich’s ataxia. He then focused on how to speed up clinical research Central MN Ataxia Support Group Update in the field including the need to obtain the By Marsha Binnebose proper funding. Ataxia is a rare disease affecting At our August meeting we had 14 people in a small percentage of people, which creates a attendance. We didn’t have a speaker scheduled major challenge when competing for research so group members talked about the Walk n’ Roll funding. He discussed tools to identify and for IAAD and what everyone has been dealing validate clinical outcome measures, possible bio- with lately. We have a speech therapist, financial markers, and the need for national and interna- planner, estate planner, and sleep disorders doc- tional cooperative work to properly address the tor scheduled to speak at our upcoming meet- issues created by rare diseases such as the ataxias. ings. In January or February we are planning The recent initiatives in the United States with for a visit from a local balance and coordination therapy group. funding from NAF for the National Ataxia
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Page 36 Generations Fall 2011 We Must Be Our Own Advocate By Deborah McClain We have to learn to be our own advocates. offer grab bars, what is wrong with asking them “Never give up. Never surrender,” is a great to add some? The least they could do is say no. If phrase from the great movie “Galaxy Quest” (at I grow weary of attending service at a church least I thought it was a great movie). But what an whose handicap ramp is not the safest, what harm awesome way to look at how we must fight for is it in asking that it be made more safe and the things we need in this challenged walk. accessible? After all, I go there too. If I love shop- My last appointment with my neurologist ping at the worlds’ most fabulous shoe store, and found me determined to get some attention and they don’t offer a single door that opens auto- make some requests known. After all, what did I matically, what’s wrong with me asking why they have to lose? They see me for 20 minutes once a can’t install an automatic door? There’s nothing year and make the determination that I am doing wrong with me asking. If I want to do my civic just fine. I see myself 24 hours a day, seven days duty and vote, and my neighborhood poll place a week, for 365 days a year. I know that I stum- offers only an entrance with three steps and no ble, fall, choke because of swallowing problems, railing, that warrants a call to the city (but that’s can no longer keep my house clean, and take all another post!). day to complete one task. So for me, it’s no ques- We have to speak up for ourselves. Yes, it tion as to whether I have a right to ask for things requires effort that we sometimes grow weary of. from my doctor. I asked for Physical Therapy, It requires a little bit of persistence. And some- Occupational Therapy, a drug known to increase times it requires just plain anger. But we must my energy, and a prescription for a wheelchair. advocate for ourselves and make our requests Know what? I got what I wanted from them – known. Whether the fight benefits only us, or because I ASKED for it. also our disabled brother or sister who has no And after they “wrote it up” I was successful in voice, we must continue to fight the fight. actually obtaining three of the four requests. Not Speak up! “Never give up, never surrender!” so bad. This article was adapted from Deborah McClain’s No one knows our needs and desires better blog site with permission. More of Deborah’s blog than we do. If I frequent a place and am contin- postings can be found at www.accessenabled.word ually frustrated that their bathroom does not press.com.

National Ataxia Registry Is Online Now The National Ataxia Foundation is pleased to new ataxia patient registry for individuals in the announce that the web-based National Ataxia United States with any type of ataxia or who are Registry (NAR) is up and running! at risk for ataxia. An essential component for rare disease Go to www.nationalataxiaregistry.org to regis- research is the availability of people with these ter. If you have questions or encounter prob- diseases to participate in drug trials and other lems, please contact the Research Coordinator research. by e-mail at nationalataxiaregistry@neurology. Even if you are registered on another patient ufl.edu, or leave a voicemail message with your registry, you are encouraged to sign-up on this name and phone number at (352) 273-9194. Gen_1103_37-48.qxp:Layout 1 9/21/11 10:48 AM Page 37

Fall 2011 Generations Page 37 NAF Directory of Chapters, Support Groups and Ambassadors

The National Ataxia Foundation has a large network of volunteers who serve as support group leaders, chapter presidents, and ambassadors for our organization. These volunteers help identify important local resources and professional care for people with ataxia and their families. If you or a loved one has been newly diagnosed with ataxia, please contact the NAF leader nearest you. If there is not a group in your area, we encourage you to visit our online social networks. You may also consid- er starting a support group in your area or becoming an NAF ambassador. If you are interested in these volunteer positions please contact Lori Shogren of the NAF staff at [email protected] or (763) 553-0020. The use of these names and contact information for any purpose other than requesting information regarding NAF or joining a chapter or support group is strictly prohibited. Social Networks (480) 883-7633 E-mail: [email protected] www.ataxia.org/chapters/Phoenix/default.aspx NAF BULLETIN BOARD Moderator – Atilla AMBASSADOR ww.ataxia.org/forum/toast.asp Bart Beck NAF CHAT ROOM Tucson, AZ Moderator – Della ([email protected]) (520) 885-8326 www.ataxia.org/connect/chat-rooms.aspx E-mail: [email protected] www.ataxia.org/chapters/Tucson/default.aspx NAF FACEBOOK GROUP www.facebook.com/group.php?gid=93226257641 — ARKANSAS — NAF FACEBOOK CAUSES AMBASSADORS www.causes.com/causes/368602?m=71bb3202& Judy and David King recruiter_id=52877151 Hot Springs Village, AR NAF FACEBOOK FANS E-mail: [email protected] www.facebook.com/lshogren?ref=profile#!/pages/ www.ataxia.org/chapters/JudyKing/default.aspx National-Ataxia-Foundation/227766109304 — CALIFORNIA — Chapters, Support Groups LOS ANGELES AREA SUPPORT GROUP LEADER and Ambassadors Sherry McLaughlin Altadena, CA — ALABAMA — (626) 791-1558 E-mail: [email protected] Web: http://laasg-ca.info ALABAMA SUPPORT GROUP LEADER www.ataxia.org/chapters/LosAngeles/default.aspx Becky Donnelly Hoover, AL N. CALIFORNIA AREA SUPPORT GROUP LEADER (205) 987-2883 Joanne Loveland E-mail: [email protected] Danville, CA www.ataxia.org/chapters/Birmingham/default.aspx E-mail: [email protected] AMBASSADOR www.ataxia.org/chapters/NorthernCalifornia/default.aspx Dianne Blain Williamson ORANGE COUNTY AREA SUPPORT GROUP LEADER Hazel Green, AL Daniel Navar (256) 828-4858 Montebello, CA E-mail: [email protected] (323) 788-7751 www.ataxia.org/chapters/DianneWilliamson/default.aspx E-mail: [email protected] — ARIZONA — www.ataxia.org/chapters/OrangeCounty/default.aspx PHOENIX AREA SUPPORT GROUP LEADERS SAN DIEGO AREA SUPPORT GROUP LEADER Rita Garcia Earl McLaughlin Chandler, AZ El Cajon, CA (480) 726-3579 (619) 447-3753 E-mail: [email protected] E-mail: [email protected] (Earl: [email protected]) www.ataxia.org/chapters/Phoenix/default.aspx www.ataxia.org/chapters/SanDiego/default.aspx Mary Fuchs Sun Lakes, AZ Continued on page 38 Gen_1103_37-48.qxp:Layout 1 9/21/11 10:48 AM Page 38

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NAF Directory www.ataxia.org/chapters/NortheastFlorida/default.aspx Continued from page 37 WEST CENTRAL FLORIDA SUPPORT GROUP LEADER Cindy Steever-Ziegler AMBASSADORS Naples, FL Barbara Bynum (239) 878-3092 Merced, CA E-mail: [email protected] (209) 383-1275 www.ataxia.org/chapters/TampaBay/default.aspx E-mail: [email protected] AMBASSADORS www.ataxia.org/chapters/BarbaraBynum/default.aspx Eleanor Daly Deborah Omictin Boynton Beach, FL Hayward, CA (561) 737-9657 (510) 783-3190 E-mail: [email protected] E-mail: [email protected] Jim Henderson www.ataxia.org/chapters/DeborahO/default.aspx Orlando, FL — COLORADO — (407) 568-9092 E-mail: [email protected] DENVER AREA SUPPORT GROUP LEADER www.ataxia.org/chapters/JimHenderson/default.aspx Charlotte DePew Meghan McBrearty Aurora, CO Tallahassee, FL (720) 379- 6887 (850) 524-9060 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/Denver/default.aspx www.ataxia.org/chapters/McBrearty/default.aspx — CONNECTICUT — — GEORGIA — TRI-STATE SUPPORT GROUP LEADER GREATER ATLANTA SUPPORT GROUP LEADERS Denise Mitchell (212) 844-8711 Lynn Robinette E-mail: [email protected] Lawrenceville, GA www.ataxia.org/chapters/Tri-State/default.aspx (770) 982-0275 E-mail: [email protected] AMBASSADOR www.ataxia.org/chapters/Atlanta/default.aspx Terre Di Placito Greg Rooks Torrington, CT Atlanta, GA (860) 489-5092 (404) 822-7451 www.ataxia.org/chapters/TerreDiPlacito/default.aspx E-mail: [email protected] — DELAWARE — Dave Zilles DE AND PA SUPPORT GROUP LEADERS Atlanta, GA Joseph DeCrescenzo (770) 399-6710 E-mail: [email protected] Newark, DE (302) 369-9287 AMBASSADOR E-mail: [email protected] Kristie Adams www.ataxia.org/chapters/Rakshys/default.aspx Savannah, GA Christina Rakshys E-mail: [email protected] Allentown, PA www.ataxia.org/chapters/KristieAdams/default.aspx (610) 395-6905 — ILLINOIS — E-mail: [email protected] GREATER CHICAGO AREA SUPPORT GROUP LEADER www.ataxia.org/chapters/Rakshys/default.aspx Richard Carr — FLORIDA — Mount Prospect, IL NORTHEAST FLORIDA SUPPORT GROUP LEADERS (847) 253-2920 Steve & Carole Brown E-mail: [email protected] Reddick, FL www.ataxia.org/chapters/Chicago/default.aspx (352) 591-5095 METRO AREA CHICAGO SUPPORT GROUP LEADER E-mail: [email protected] Christopher Marsh Wayne & Ann Mayo Chicago, IL St. Augustine, FL (312) 662-1127 (904) 471-4579 E-mail: [email protected] E-mail: [email protected] http://health.groups.yahoo.com/group/u_r_notalone/ John & Sherri Richwine www.ataxia.org/chapters/ChrisMarsh/default.aspx Jacksonville, FL AMBASSADOR (904) 996-0699 Elaine Darte E-mail: [email protected] Belleville, IL  Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 39

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(618) 397-3259 Tanya Tunstull E-mail: [email protected] Detroit, MI www.ataxia.org/chapters/SouthernIllinois/default.aspx (313) 736-2827 — IOWA — E-mail: [email protected] www.ataxia.org/chapters/Detroit/default.aspx IOWA SUPPORT GROUP LEADER Emily Medina WESTERN MICHIGAN SUPPORT GROUP LEADER West Des Moines, IA Lynn K. Ball (515) 727-8713 Grand Rapids, MI E-mail: [email protected] (616) 735-2303 www.ataxia.org/chapters/EmilyMedina/default.aspx E-mail: [email protected] www.ataxia.org/chapters/LynnBall/default.aspx — KENTUCKY — — MINNESOTA — AMBASSADOR Janice Johnson TWIN CITIES AREA SUPPORT GROUP LEADER Brownsville, KY Lenore Healey Schultz (270) 597-3854 Minneapolis, MN www.ataxia.org/chapters/JaniceJohnson/default.aspx (612) 724-3784 E-mail: [email protected] — LOUISIANA — www.ataxia.org/chapters/TwinCities/default.aspx LOUISIANA CHAPTER PRESIDENT CENTRAL MN SUPPORT GROUP LEADER Carla Hagler Marsha Binnebose Lacombe, LA St. Cloud, MN (985) 882-9830 (320) 240-9391 E-mail: [email protected] E-mail: [email protected] Web: www.angelfire.com/la/ataxiachapter www.ataxia.org/chapters/StCloud/default.aspx www.ataxia.org/chapters/Louisiana/default.aspx — MAINE — AMBASSADORS Lori Goetzman MAINE SUPPORT GROUP LEADER Rochester, MN Kelley Rollins (507) 282-7127 Bowdoinham, ME E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/LoriGoetzman/default.aspx www.ataxia.org/chapters/Maine/default.aspx Julie Schuur — MARYLAND — Luverne, MN CHESAPEAKE CHAPTER PRESIDENT (507) 283-2555 Carolyn Davis E-mail: [email protected] Vienna, VA www.ataxia.org/chapters/JulieSchuur/default.aspx (703) 759-2008 — MISSISSIPPI — E-mail: [email protected] MISSISSIPPI CHAPTER PRESIDENT www.ataxia.org/chapters/Chesapeake/default.aspx Camille Daglio JOHNS HOPKINS ATAXIA SUPPORT GROUP LEADER Hattiesburg, MS Jill Detherage E-mail: [email protected] Baltimore MD www.ataxia.org/chapters/Mississippi/default.aspx (410) 614-6577 E-mail: [email protected] — MISSOURI — www.ataxia.org/chapters/JHASG/default.aspx KANSAS CITY SUPPORT GROUP LEADERS AMBASSADOR Jim Clark Karen Rosenberger Gladstone, MO Frederick, MD (816) 468-7260 (301) 682-5386 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/KansasCity/default.aspx www.ataxia.org/chapters/KarenRosenberger/default.aspx Lois Goodman Independence, MO — MASSACHUSETTS — (816) 257-2428 NEW ENGLAND SUPPORT GROUP LEADERS www.ataxia.org/chapters/KansasCity/default.aspx Donna and Richard Gorzela AMBASSADORS Andover, MA (978) 475-8072 Roger Cooley www.ataxia.org/chapters/NewEngland/default.aspx Columbia, MO (573) 474-7232 before noon — MICHIGAN — DETROIT AREA SUPPORT GROUP LEADER Continued on page 40 Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 40

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NAF Directory www.ataxia.org/chapters/Tarheel/default.aspx Continued from page 39 Jerry Hauser Advance, NC (336) 998-2942 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/RogerCooley/default.aspx Susan L. Strode, PhD — OHIO — Jefferson City, MO GREATER CINCINNATI AREA ATAXIA (573) 659-4759 SUPPORT GROUP LEADERS E-mail: [email protected] Jennifer Mueller www.ataxia.org/chapters/Strode/default.aspx Cincinnati, OH — NEVADA — (513) 834-7002 E-mail: [email protected] AMBASSADOR www.ataxia.org/chapters/JenniferM/default.aspx Bernie Chippoletti Julia Soriano Las Vegas, NV Cincinnati, OH (702) 362-8774 ext. 0 (513) 899-1195 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/LasVegas/default.aspx AMBASSADORS — NEW HAMPSHIRE — Joe Miller NEW HAMPSHIRE SUPPORT GROUP LEADER Mesopotamia, OH Jill Porter (440) 693-4454 Manchester, NH E-mail: [email protected] (603) 626-0129 www.ataxia.org/chapters/JoeMiller/default.aspx E-mail: [email protected] Cecelia Urbanski www.ataxia.org/chapters/Concord/default.aspx Mentor, OH — NEW JERSEY — (440) 255-8284 E-mail: [email protected] TRI-STATE SUPPORT GROUP LEADER www.ataxia.org/chapters/CentralOhio/default.aspx Denise Mitchell (212) 844-8711 — OKLAHOMA — E-mail: [email protected] OKLAHOMA SUPPORT GROUP LEADER www.ataxia.org/chapters/Tri-State/default.aspx Darrell Owens — NEW YORK — Bartlesville, OK (918) 331-9530 CENTRAL NEW YORK SUPPORT GROUP LEADER E-mail: [email protected] Mary Jane Damiano www.ataxia.org/chapters/DarrellOwens/default.aspx N. Syracuse, NY Judy Tarrants AMBASSADOR Fabius, NY Mark Dvorak Home: (315) 683-9486 Cell: (315) 706-6555 Norman, OK E-mail: [email protected] (405) 447-6085 www.ataxia.org/chapters/CentralNewYork/default.aspx E-mail: [email protected] www.ataxia.org/chapters/Ambassador/default.aspx TRI-STATE SUPPORT GROUP LEADER Denise Mitchell — OREGON — Bronxville, NY WILLAMETTE VALLEY SUPPORT GROUP LEADER (212) 844-8711 Ivy Stilwell, CCC-SLP E-mail: [email protected] Albany, OR www.ataxia.org/chapters/Tri-State/default.aspx (541) 812-4162 Fax: (541) 812-4614 AMBASSADOR E-mail: [email protected] Valerie Ruggiero www.ataxia.org/chapters/Willamette/default.aspx Fishkill, NY — PENNSYLVANIA — (845) 897-5632 SOUTHEAST PENNSYLVANIA SUPPORT GROUP LEADER E-mail: [email protected] Liz Nussear www.ataxia.org/chapters/ValerieRuggiero/default.aspx Norristown, PA — NORTH CAROLINA — (610) 272-1502 TARHEEL ATAXIA SUPPORT GROUP LEADERS E-mail: [email protected] Norma Bryant www.ataxia.org/chapters/SEPennsylvania/default.aspx Cary, NC PA AND DE SUPPORT GROUP LEADERS (513) 543-9563 Joseph DeCrescenzo E-mail: [email protected] Newark, DE  Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 41

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(302) 369-9287 Vienna, VA E-mail: [email protected] (703) 759-2008 www.ataxia.org/chapters/Rakshys/default.aspx E-mail: [email protected] Christina Rakshys www.ataxia.org/chapters/Chesapeake/default.aspx Allentown, PA AMBASSADORS (610) 395-6905 Donna Ring E-mail: [email protected] St. Stephens Church, VA www.ataxia.org/chapters/Rakshys/default.aspx (804) 769-3983 — SOUTH CAROLINA — E-mail: [email protected] www.ataxia.org/chapters/Ring/default.aspx AMBASSADOR Cece Russell — WASHINGTON — Easley, SC SEATTLE AREA SUPPORT GROUP LEADER (864) 220-3395 Milly Lewendon E-mail: [email protected] Kirkland, WA www.ataxia.org/chapters/Carolinas/default.aspx (425) 823-6239 — TENNESSEE — E-mail: [email protected] www.ataxia.org/chapters/Seattle/default.aspx MIDDLE TN AREA SUPPORT GROUP LEADER Vicki Tyler AMBASSADOR Nashville, TN Linda Jacoy (615) 646-3024 Spokane, WA E-mail: [email protected] (509) 482-8501 www.ataxia.org/chapters/VickiTyler/default.aspx E-mail: [email protected] www.ataxia.org/chapters/Spokane/default.aspx — TEXAS — International CENTRAL TEXAS SUPPORT GROUP Linda Crawley Support Groups and Ambassadors Liberty Hill, TX (512) 635-9478 — AUSTRALIA — E-mail: [email protected] AMBASSADOR www.ataxia.org/chapters/Linda/default.aspx Renee Moore (Nee McCallum) HOUSTON AREA SUPPORT GROUP LEADER Hocking, W. Australia Angela Cloud 61-8-9404-7052 Houston, TX E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/ReneeMoore/default.aspx www.ataxia.org/chapters/Houston/default.aspx — CANADA — NORTH TEXAS SUPPORT GROUP LEADER AMBASSADORS David Henry Jr. Susan M. Duncan Trophy Club, TX Ottawa, Ontario E-mail: [email protected] (613) 820-7990 (817) 491-4573 E-mail: [email protected] www.ataxia.org/chapters/NorthTexas/default.aspx www.ataxia.org/chapters/SusanDuncan/default.aspx AMBASSADOR Prentis Clairmont Dana LeBlanc Ottawa, Ontario Orange, TX (613) 864-8545 (409) 883-5570 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/PrentisClairmont/default.aspx Web: http://ladyd1973.tripod.com/index.html Terry Greenwood www.ataxia.org/chapters/GoldenTriangle/default.aspx Winnipeg, Manitoba — UTAH — (204) 488-4155 E-mail: [email protected] UTAH SUPPORT GROUP LEADER www.ataxia.org/chapters/TerryGreenwood/default.aspx Dr. Julia Kleinschmidt Salt Lake City, UT — INDIA — (801) 585-2213 INDIA ATAXIA SUPPORT GROUP LEADER E-mail: [email protected] Chandu Prasad George. CH, www.ataxia.org/chapters/Utah/default.aspx Secunderabad, India Phone: 0091-040-27961269 — VIRGINIA — Mobile: 0091-9949019410 Fax: 091-040-27971043 CHESAPEAKE CHAPTER PRESIDENT E-mail: [email protected] Carolyn Davis www.ataxia.org/chapters/Chandu/default.aspx O Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 42

Generations Fall 2011 Page 42 Calendar of Events The most current event information is available on the NAF website, www.ataxia.org. SUPPORT GROUP MEETINGS chapters/NewEngland/default.aspx — Saturday, October 8 — North Texas Ataxia Support Group Meeting Central Minnesota Ataxia Support Group Time: 10 a.m. – noon Meeting Location: Las Colinas Cancer Center, 7415 Las Time: 10 a.m. – noon Colinas Blvd., Irving, TX 75039. The parking is free and the building is handicap accessible. We meet Location: St Cloud Public Library, 1300 W. Saint in the front lobby of the Las Colinas Cancer Center. Germain St., Saint Cloud, MN 56301. It is a one-story building behind the Regions Bank. Details: Guest speaker Dr. Troy Payne will present There is a map on their website. www.LasColinas on sleep and ataxia disorders. For more informa- CancerCenter.com tion contact Marsha Binnebose at marshabinne [email protected] or (320) 240-9391. www.ataxia. Details: Most of the meeting time is for sharing org/chapters/Binnebose/default.aspx and asking questions about the difficulties and successes we have in our everyday life with ataxia. Kansas City Area Ataxia Support Group Meeting From time to time we do have an out-side speaker Time: 2 p.m. – 4 p.m. address some of our concerns from the caregivers, Location: Northeast Library, 6000 Wilson Rd., patients and families. For additional information Kansas City, MO. please contact David Henry Jr. at cheve11e@sbc Details: For more information contact Lois global.net. Please check the web site for updates. Goodman at (816) 257-2428 or Jim Clark at (816) www.ataxia.org/chapters/NorthTexas/default.aspx 468-7260 or [email protected]. www. San Diego Ataxia Support Group Meeting ataxia.org/chapters/KansasCity/default.aspx Time: 1 p.m. – 3 p.m. New England Ataxia Support Group Meeting Location: Sharp Rehabilitation Center, 2999 Time: Noon – 3 p.m. Health Center Dr. on the East side of Hwy 163 Location: Mass General Hospital in the Yawkey between Genessee Ave. and Mesa College Dr. Building on the 7th floor in room 980. behind Sharp Memorial Hospital. There is plenty of free parking. Details: The topic of this meeting will be fall prevention. For more information please contact Details: For more information contact Earl Donna Gorzela at (978) 475-8072. www.ataxia.org/ McLaughlin at (619) 447-3753 or [email protected]. www.ataxia.org/chapters/SanDiego/default.aspx — Wednesday, October 12 — Willamette Valley Ataxia Support Group Meeting Time: 11:30 a.m. – 1 p.m. TISSUE Location: Albany General Hospital, 1046 6th Ave. SW, Albany, OR 97321. DONATION Details: For more information contact Ivy Stilwell If you are interested in helping ataxia at (541) 812-4162 or [email protected]. research by donation of tissue after www.ataxia.org/chapters/Willamette/default.aspx death, please contact Dr. Arnulf — Saturday, October 15 — Koeppen for information and details. Denver Area Ataxia Support Group Meeting Arnulf Koeppen, MD Time: 1 p.m. – 4 p.m. Professor of Neurology Location: Swedish Medical Center, 501 E. Hamp- VA Medical Center den Ave., Englewood, CO 80113. Meeting room: Spruce A & B. 113 Holland Ave., Albany, NY 12208 Details: For more information contact Charlotte Phone: 518.626.6377 Fax:518.626.6369 Depew at (720) 379-6887 or cldepew77@comcast. E-mail: [email protected] net. www.ataxia.org/chapters/Denver/default.aspx Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 43

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Detroit Area Ataxia Support Group Meeting DeCrescenzo at (302) 369-9287 or jdecr@comcast. Time: 1 p.m. – 4 p.m. net or Chris Rakshys at (610) 395-6905 or rakshys Location: Harper University, 3990 John R, Detroit, @ptd.net. www.ataxia.org/chapters/DeCrescenzo/ MI 48201. Wertz Classroom 1237. Near the main default.aspx entrance off of John R. — Saturday, October 29 — Details: For more information contact Tanya Tun- stull at (313) 736-2827 or [email protected]. Alabama Ataxia Support Group Meeting www.ataxia.org/chapters/Detroit/default.aspx Time: 10 a.m. – 2 p.m. Location: Covenant Presbyterian Church, Home- Greater Cincinnati Area Ataxia Support Group wood, AL Meeting Details: For more information please contact Time: 1 p.m. – 3 p.m. Becky Donnelly at (205) 987-2883 or donnelly Location: Meeting room of the Groesbeck Branch [email protected]. www.ataxia.org/chapters/Birming of the Cincinnati Public Library at 2994 W. ham/default.aspx Galbraith Rd., Cincinnati, OH 45239. Contact us at (513) 369-4454 or www.cincinnatilibrary.org/ — Saturday, November 5 — branches/groesbeck.html Central Texas Ataxia Support Group Meeting Details: For questions contact Jennifer Mueller Time: 11 a.m. – 1:30 p.m. at [email protected]. www.ataxia.org/chapters/ Location: The Dell Children’s Medical Center of JenniferM/default.aspx Central TX, 4900 Mueller Blvd., Austin, TX 78723. Maine Ataxia Support Group Meeting We will meet in Central Conference Room 4E.031 Time: Noon – 3 p.m. A & B (located between 4N & 4C) on the fourth Location: TBD floor. The medical center’s main number is (512) 324-0000. Details: For more information contact Kelley Rollins at [email protected]. www.ataxia.org/chapters/Maine/ Details: For more information contact Linda Craw- default.aspx ley at (512) 635-9478 or [email protected]. www.ataxia.org/chapters/Linda/default.aspx Orange County Ataxia Support Group Meeting Greater Atlanta Ataxia Support Group Meeting Time: 1:30 p.m. – 4 p.m. Time: 1 p.m. Location: Orange Coast Memorial Medical Center (Breast Center Bldg., Room 1A), 9900 Talbert Ave., Location: Emory Center for Rehabilitation Medi- Fountain Valley, CA 92708. cine, 1441 Clifton Rd., Room 101, Atlanta, GA 30322 Details: For more information Contact Daniel Navar at [email protected]. www.ataxia.org/chapters/ Details: For more information contact Dave Zilles OrangeCounty/default.aspx at (770) 399-6710 or [email protected]. www. ataxia.org/chapters/Atlanta/default.aspx Twin Cities Ataxia Support Group Meeting West Central FL Ataxia Support Group Time: 10 a.m. Meeting and Thanksgiving Lunch Location: The Presbyterian Homes of Roseville at 1910 W. County Rd. D, Roseville, MN 55112. Time & Location: TBD Details: For more information contact Lenore Details: For more information please contact Cindy Healey Schultz at [email protected]. Steever-Ziegler at (239) 878-3092 or csteever www.ataxia.org/chapters/TwinCities/default.aspx @msn.com. www.ataxia.org/chapters/TampaBay/ default.aspx — Saturday, October 22 — — Wednesday, November 9 — DE/PA Ataxia Support Group Meeting Willamette Valley Ataxia Support Group Meeting Time: 10 a.m. – 1 p.m. Time: 11:30 a.m. – 1 p.m. Location: Christiana Care Hospital, 4755 Ogle- town-Stanton Rd., Newark, DE 19718. We will Location: Albany General Hospital, 1046 6th Ave. meet in Conference Room #1100 which is located SW, Albany, OR 97321. directly off the main lobby, convenient for those Details: For more information contact Ivy Stilwell with limited mobility. Details: For more information please contact Joe Continued on page 44 Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 44

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Calendar of Events global.net. Please check the web site for updates. Continued from page 43 www.ataxia.org/chapters/NorthTexas/default.aspx Northeast Florida Ataxia Support Group Meeting at (541) 812-4162 or [email protected]. Time: 1:30 p.m. www.ataxia.org/chapters/Willamette/default.aspx Location: Baptist Hospital South. Directions to — Thursday, November 10 — Baptist South: From I-95, take exit 335, which is Tri-State Ataxia Support Group Meeting Old St. Augustine Rd. Go East. Follow the signs to Time: 6 p.m. – 8 p.m. the hospital. We are less than a half-mile off of the interstate. Directions to the conference rooms from Location: Beth Israel, Phillips Ambulatory Care the main entrance: Come in the main entrance and Center (PACC), 2nd floor conference room #3, 10 make a right. Go past the first hallway on the left Union Square, New York, NY. and the Azalea, Begonia and Camellia conference Details: For more information contact Denise rooms will be the next doors. All meetings will be Mitchell at (212) 844-8711 or markmeghan@ in the Azalea and Begonia rooms. aol.com. www.ataxia.org/chapters/Tri-State/default. Details: For more information please contact aspx Ann Mayo at [email protected] or — Saturday, November 12 — (904) 471-4579. www.ataxia.org/chapters/North Central Minnesota Ataxia Support Group eastFlorida/default.aspx Meeting Southeast PA Ataxia Support Group Meeting Time: 10 a.m. - noon Time: 10 a.m. – 11:30 a.m. Location: St. Cloud Public Library, 1300 W. Saint Location: Mercy Suburban Hospital, Walkup Room Germain St., Saint Cloud, MN 56301. on the second floor. The meeting is followed by Details: Guest speaker, Nicole Zitzow will speak on lunch at Applebee’s across the street. motor speech therapy, assisted communication, Details: Attendees must RSVP to Liz Nussear by and swallowing issues. For more information con- Friday before the meeting at (610) 272-1502 tact Marsha Binnebose at marshabinnebose@ or [email protected]. www.ataxia.org/chapters/SE yahoo.com or (320) 240-9391. www.ataxia.org/ Pennsylvania/default.aspx chapters/StCloud/default.aspx — Saturday, November 19 — Los Angeles Area Ataxia Support Group Chesapeake Chapter Fall Picnic Pizza Party Time: 10 a.m. – 3 p.m. Time: 2 p.m. – 4 p.m. Location: Glass Pavilion on the Johns Hopkins Details: For meeting location and general informa- University Homewood Campus in Baltimore, MD. tion, please contact Sherry McLaughlin at (626) 791-1558 or [email protected]. www.ataxia. Details: Bring your friends, family, and favorite dish! org/chapters/LosAngeles/default.aspx Please email any questions to Leela Chakravarti at [email protected] or contact Carolyn Davis at North Texas Ataxia Support Group Meeting [email protected] or (703) 759-2008. Time: 10 a.m. – noon Twin Cities Ataxia Support Group Meeting Location: Las Colinas Cancer Center, 7415 Las Time: 10 a.m. Colinas Blvd., Irving, TX 75039. The parking is free and the building is handicap accessible. We meet Location: The Presbyterian Homes of Roseville at in the front lobby of the Las Colinas Cancer Center. 1910 W. County Rd. D, Roseville, MN 55112. It is a one-story building behind the Regions Bank. Details: For more information contact Lenore There is a map on their website. www.LasColinas Healey Schultz at [email protected]. CancerCenter.com www.ataxia.org/chapters/TwinCities/default.aspx Details: Most of the meeting time is for sharing — Sunday, November 20 — and asking questions about the difficulties and Chicago Area Ataxia Support Group Meeting successes we have in our everyday life with ataxia. From time to time we do have an out-side speaker Time: 1 p.m. address some of our concerns from the caregivers, Location: The Good Samaritan Hospital, White Oak patients and families. For additional information Room, 3815 Highland Ave., Downers Grove, IL. please contact David Henry Jr. at cheve11e@sbc Details: For more information contact Richard  Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 45

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Carr at (847) 253-2920 or [email protected]. www. Location: Orange Coast Memorial Medical Center ataxia.org/chapters/Chicago/default.aspx (Breast Center Bldg., Room 1A), 9900 Talbert Ave., — Saturday, December 3 — Fountain Valley, CA 92708. Details: For more information Contact Daniel Navar Detroit Area Ataxia Support Group Meeting at [email protected]. www.ataxia.org/chapters/ Time: 1 p.m. – 4 p.m. OrangeCounty/default.aspx Location: Harper University, 3990 John R, Detroit, San Diego Ataxia Support Group MI 48201. Wertz Classroom 1237. Near the main Christmas Party entrance off of John R. Time: 1 p.m. – 3 p.m. Details: For more information contact Tanya Tun- stull at (313) 736-2827 or [email protected]. Location: Sharp Rehabilitation Center,2999 Health www.ataxia.org/chapters/Detroit/default.aspx Center Dr. on the East side of Hwy 163 between Genessee Ave. and Mesa College Dr. — Saturday, December 10 — behind Sharp Memorial Hospital. There is plenty of Greater Atlanta Ataxia Support Group free parking. Holiday Party Details: For more information contact Earl McLaughlin at (619) 447-3753 or [email protected]. Time: 1 p.m. www.ataxia.org/chapters/SanDiego/default.aspx Location: Emory Center for Rehabilitation Medi- cine, 1441 Clifton Rd., Room 101, Atlanta, GA. — Wednesday, December 14 — Details: For more information contact Dave Zilles Willamette Valley Ataxia Support Group Meeting at (770) 399-6710 or [email protected]. www. Time: 11:30 a.m. – 1 p.m. ataxia.org/chapters/Atlanta/default.aspx Location: Albany General Hospital, 1046 6th Ave. Kansas City Area Ataxia Support Group Meeting SW, Albany, OR 97321. Time: 2 p.m. – 4 p.m. Details: For more information contact Ivy Stilwell Location: Northeast Library, 6000 Wilson Rd., at (541) 812-4162 or [email protected]. Kansas City, MO. www.ataxia.org/chapters/Willamette/default.aspx Details: For more information contact Lois — Saturday, December 17 — Goodman at (816) 257-2428 or Jim Clark at (816) 468-7260 or [email protected]. www. Greater Cincinnati Area Ataxia Support Group ataxia.org/chapters/KansasCity/default.aspx Meeting Time: 1 p.m. – 3 p.m. North Texas Ataxia Support Group Meeting Location: Meeting room of the Groesbeck Branch Time: 10 a.m. – noon of the Cincinnati Public Library at 2994 W. Location: Las Colinas Cancer Center, 7415 Las Galbraith Rd., Cincinnati, OH 45239. Contact Colinas Blvd., Irving, TX 75039. The parking is free us at (513) 369-4454 or www.cincinnatilibrary.org/ and the building is handicap accessible. We meet branches/groesbeck.html in the front lobby of the Las Colinas Cancer Center. Details: For questions contact Jennifer Mueller It is a one-story building behind the Regions Bank. at [email protected]. www.ataxia.org/chapters/ There is a map on their website. www.LasColinas JenniferM/default.aspx CancerCenter.com Details: Most of the meeting time is for sharing Twin Cities Ataxia Support Group Holiday Party and asking questions about the difficulties and Time: 10 a.m. successes we have in our everyday life with ataxia. Location: The Presbyterian Homes of Roseville at From time to time we do have an out-side speaker 1910 W. County Rd. D, Roseville, MN 55112. address some of our concerns from the caregivers, Details: For more information contact Lenore patients and families. For additional information Healey Schultz at [email protected]. please contact David Henry Jr. at cheve11e@sbc www.ataxia.org/chapters/TwinCities/default.aspx global.net. Please check the web site for updates. www.ataxia.org/chapters/NorthTexas/default.aspx AWARENESS & FUNDRAISING EVENTS Orange County Ataxia Support Group — Saturday, October 1 — Meeting/Holiday Get-Together Time: 1:30 p.m. – 4 p.m. Continued on page 46 Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 46

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Calendar of Events Tea Time for Ataxia Continued from page 45 Time: 11:30 a.m. – 1:30 p.m. Location: The Aubrey Rose Tea Room, 8362 La 3rd Annual Central Texas Mesa Blvd., La Mesa, CA. Walk n’ Roll for Ataxia (NEW DATE) Details: Tea is $40 per person. All proceeds Time: 9 a.m. benefit the National Ataxia Foundation. Please Location: San Gabriel Park, Georgetown, TX. RSVP by Oct. 1 to Jane Jaffe at (619) 286-9745 or Details: Registration is $25 and includes an event [email protected]. t-shirt. If you have any questions, comments, Sunday, November 6 or suggestions please contact Linda Crawley at [email protected] or (512) 635-9478. https:// ING New York City Marathon naf.myetap.org/11TXWnR/ Details: Fighting Ataxia Together - Project Organizer, Kathleen is participating in the INC New York City Dewayne’s 3rd Annual Marathon in honor of her father, who has ataxia, to 5K Walk, Run n’ Roll for Ataxia raise awareness and funds for ataxia. All proceeds Time: Late registration starts at 7:30 a.m. Race benefit the National Ataxia Foundation. www.crowd starts at 8:30 with the 10K going first and followed rise.com/ataxia/fundraiser/KathleenRichards a few minutes later by the 5K. Location: First Baptist Church, 441 Lewie St., Friday, November 18 Gilbert, SC 29054 Butler Area School District Jeans Day for Ataxia Details: Races are walk, run, and roll. Wheelchairs Details: The Butler Area School District in Butler, are encouraged. For more information, to volunteer, PA is holding its Second Annual Jeans Day for or to register for this event please contact Anna Ataxia. All proceeds benefit the National Ataxia Hite at (803) 532-2447 or [email protected]. www. Foundation. For more information about this event active.com/running/gilbert-sc/dewaynes-5k-10k- contact Dena at [email protected]. 2011 — Sunday, November 20 — — Saturday, October 15 — Ironman for Ataxia 8th Annual Lou Coletti Memorial Details: From Joseph Golminas “This year, in mem- Golf Tournament ory of my mother, Peggy Golminas, I will once again Location: The Belleair Country Club, Belleair, FL complete in an Ironman Triathlon, this time in 33756. Arizona on Nov. 20 to raise money and awareness Details: All proceeds benefit the National Ataxia for the National Ataxia Foundation.” For more in- Foundation. To participation or for more informa- formation, visit www.ironmanarizona.com. https:// tion Please contact Scott Coletti at scott.coletti@ naf.myetap.org/fundraiser/Ironman/fundraiser/ gmail.com or (727) 741-0838. Ironman/ O

Remembering NAF in Your Will There have been a number of heroes over chosen NAF as a beneficiary, have given any- the years that have quietly made a significant where from a few thousand dollars to nearly one impact on the National Ataxia Foundation and million dollars. Their forethought and benevo- the ataxia families it serves. These are people lence has enabled the Foundation to support who named NAF as a beneficiary in their will. promising ataxia research and to provide mean- Most of the time the Foundation is unaware of ingful programs and services to ataxia families the kind acts of these champions until after they across the country. are gone, but each time we are deeply touched Perhaps this is the time to consider adding the and honored by their selfless commitment in National Ataxia Foundation in your will For more helping others. information, please call NAF at (763) 553-0020 Over the years these individuals, who have or e-mail [email protected]. Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 47

Fall 2011 Generations Page 47 Memorials and In Your Honor The National Ataxia Foundation is grateful to those who have made contributions in memory or in honor of their friends and families whose names are listed below. This list reflects contributions made from June through August 2011. We are sorry that we cannot separate the memorial contributions from those made in honor of someone, as sometimes the person making the contribution does not let us know if the contribution is a memorial or in honor of their friend or family member. Cheryl Ackerman Tal Dziengiel Keiko Kain Charity Ranger Sherry Adams Andrew Egeressy Barry Karas Jim Richards Sharon Baggett Philip Eisenhaur Mary Kolakosky Kathleen Richards Tracey Balis Dick Eldredge Sue Kremen Janet Riley Jeannie Ball Robert Ellsperman Marcella Kukelhan DeNiece Roach Lynn Ball Daniel Eustache Normand LaBarre David Rollins Jeannette Banta Shirley Even Leonilla Lake Thomas Sanders Ruby Barkhouse Trinity Falk Peter Lanzendorfer Santa Croce Family Karen Battles Matthew Farrow Gerald Laukhuf Donald Santa Croce Tom Bauder Jill Flinn Lorrie Laukhuf Fred Santa Croce Rick Bauder Steve Flinn Jennifer Leader Rogene Schreiber Luke Baxley Jerry Frey Dwayne LeBlanc Derek Semler William Baxley, III Gregson Gann Candi Leonard Henry Skala, Jr. Maria Beltran John Gannon Herriet Lewis Marjorie Smiley Sandee Berst Rita Garcia Richard Lewis Adrian Smith Joseph Black Josephine Gheller-Brott Phyllis Lindberg Douglas Smith Carol Brand Tanya Goldman Peggy Littlejohn Mary Smith Sam Bridgeman Rosemary Golminas Matt Machado Waverly Smith Molly Brooks Fred Gooch Caryn Mahaffy Mikayla Spangler David Brunke Brenda Graner Clarence Mahler Stafford Family Ruth Buckley Lawrence Graner Walter Mahler Marilyn Stevens Jessica Budreau Richard Gregory Brent Masserant Vickie Sullivan Ted Bulotti Mary Griswold Victor Masserant Family Elizabeth Tanner Martin Burke Scott Griswold Betty Mathine Joe Thell Kyle Bussas Gladys Gruetzmacher Bob McCleery Fayne Thiel Benjamin Cantor Jackie Guercio Frank McConville Dr. Aymee Irene Cantor Denise Guercio-Higdon Gloria McConville Torres-Michels Collin Capistrant Ricardo Guerrero Alisa McFarland Louis Toups Jenny Chang Teresita Guerrero Charley McLaughlin Morton-Tribbett Dave Chernoff Annabel Guffin Linda Meier Wedding Eileen Chernoff George Guffin Jennifer Moon Roy Troutt, Jr. M/M David Chernoff George Hacke Jack Moore Kandy Turpin Robert Coffey Mary Hall Jackie Moore Terry Underwood Eurance Collins Donald Hardy Willard Moore Jacob Van Buren Tiffinay Compiano Jenice Harris Carol Mullen Rudy Van’t Hoff Rose Constance Shirley Hayworth Grace Mutschler Janet Veal Larry Cooley Robert Healey, MD Louis Neuendorf Sharon Vinings Russell Crystal Richard Hinman Jack Noonan Shirley Wagner Mary Danson Johnny Hogan Joan Noonan Don Walker DeMints Family Lloyd Howell Alayne Novalany Carole Walters Roman DiCroce Lynda Howell William Olesak Barry Washburn Betty Dienstfrei Bill Huber Debbie Omictin Jeff Wentzell Thomas DiPietro A.J. Hughes Norma Payne Mike Williams Fred Donnelly Krista Humes Frank Pellegrino Lena Windhorst Rick Donnelly Howard Hunnius Eric Peterson Donald Womeldorf Barbara Doogan Robert Jackman Alyn Platt Margaret Working Denise Drake Lisa Jaffe Scott Quinn Elizabeth Wright O Gen_1103_37-48.qxp:Layout 1 9/21/11 10:49 AM Page 48

National Ataxia Foundation Non-Profit 2600 Fernbrook Lane, Suite 119 Organization Minneapolis, MN 55447-4752 U.S. Postage (763) 553-0020 PAID Madison, SD Permit No.32

Is your address correct? Are you receiving more than one issue of Generations? If there are any changes that need to be made, please call NAF at (763) 553-0020 or e-mail [email protected]. Thank you!

GIFT – HONOR – MEMORIAL MEMBERSHIP

A contribution given in memory of a friend or Yes, I want to help fight ataxia! Enclosed is my relative is a thoughtful and lasting tribute, as membership donation. (Gifts in US Dollars) K are gifts to honor your friends or family. A Lifetime membership $500 Gift Membership is a wonderful gift to a friend Annual memberships: or relative for special occasions like birthdays, K Patron membership $100-$499 graduations, anniversaries, and holidays. NAF K Professional membership $55 will acknowledge your gift without reference to K Individual $35 the amount. K Household $55 K Simply fill out this form and mail with your check Addresses outside the U.S. please add $15 or credit card information to the National Ataxia Name ______Foundation. Address ______Honor/Memorial envelopes are available free of City/State/Zip ______charge by writing or calling NAF. Phone ______My contribution is: K K K E-Mail ______In Memory In Honor Gift Membership K Yes, sign me up for NAF e-mails Name ______PAYMENT INFORMATION Occasion ______Gifts are tax deductible under the fullest extent of the law. K Send Acknowledgment Card to: Check. Please make payable to the National Ataxia Foundation. Name ______Total Amount Enclosed $ ______Address ______K K K City/State/Zip ______Credit Card: Visa MasterCard Discover Name on Card ______From: Card #______Name ______Exp. Date ______CVV # ______Address ______Signature ______City/State/Zip ______Phone Number ______