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The Official Publication of the National Ataxia Foundation Volume 35, Number 1 Spring 2007 The Dentate Nucleus in F riedre ich’ s Ataxia

By Arnulf H. Koeppen, MD Research and Neurology Services, V. A. Medical Center, Albany, NY 12208

Friedreich’s ataxia (F RDA) affects several the small power packs that provide energy to organs, including heart, insulin-producing cells the cell in the form of adenosine triphosphate, of the pancreas, bones, peripheral nerves, spinal and the work by Dr. Lamarche and his collabo - cord, ganglia of the dorsal spinal roots, and a rators in Sherbrooke received renewed atten - specific area of the brain called the dentate tion. Indeed, the disease of the heart in FRDA nucleus. can be attributed, in some measure, to iron in Since the first description of this autosomal mitochondria. recessive ataxia by Nicholaus Friedreich in the At this time, there is no evidence that a simi - 19th century, most neurologists have consid - lar accumulation of iron occurs in the spinal ered FRDA a disease of the spinal cord. cord or its dorsal root ganglia. The normal Friedreich was aware of heart disease in his dentate nucleus of the cerebellum ( f ig. 1 on patients but thought that it was due to high page 2) contains abundant iron, possibly typhoid-like fever. making it especially vulnerable to frataxin In 1980, Dr. Jacques B. Lamarche and associ - deficiency in FRDA. The dentate nucleus is ates in Sherbrooke, Québec, Canada, discov - the main way-station for impulses leaving the ered minute iron-rich granules in heart muscle cerebellum. Nothing gets past the dentate fibers of patients with FRDA. Their important nucleus without a final check. Loss of nerve observation was ignored for 16 years. cells in this structure contributes to ataxia in In 1996, Dr. Victoria Campuzano and her FRDA patients. colleagues in Dr. Massimo Pandolfo’s Houston It is remarkable that clinicians charged with laboratory identified the mutation in FRDA, the care of FRDA patients have paid little a homozygous GAA trinucleotide repeat attention over the years to this failure of cere - expansion on chromosome 9, and established bellar output. Research focusing on this unique that a protein named frataxin was deficient. gray matter in the cerebellum is also important This protein serves iron metabolism in all cells, specifically in mitochondria. Mitochondria are Continued on page 3 Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 2

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Table of Conten ts

2007 Annual Membership Meeting Articles (cont.) “The Bridge to Hope ” Recap ...... 16 From the Desk of the Executive Director ...... 31 Quotes from the Annual Meeting ...... 18 The Michael and Patricia Clementz Family A Special Thank You ...... 22 Endowment Fund for SCA 3 Research ...... 34 2007 Annual Meeting Photos ...... 40 Pull a Fast One on Your Mind ...... 34 2008 Annual Membership Meeting Pennies from Heaven ...... 35 Awareness Reaches Thousands “Blazing a Trail in Research” ...... 19 Through Concert Publicity ...... 36 Articles Workplace Giving ...... 44 Caregiver’s Corner ...... 12 Research Summaries Coffee Does Not Increase Risk NAF Research Grant Summaries ...... 4 of High Blood Pressure ...... 13 The Dentate Nucleus in Friedreich’s Ataxia .... 14 Following Simple Back Care Rules Helps ...... 14 Crossing the Bridge to Hope ...... 25 Gentle Yoga Best for Back Pain ...... 15 Membership Topics NAF Giving Options Abound ...... 20 Tell Your Story in Generations ...... 20 NAF Merchandise ...... 24 “The Ride” Raised Awareness, Chapter and Support Group News ...... 38 Research Funds to Fight Ataxia ...... 21 NAF Chapters and Support Groups ...... 41 A Special Thank You ...... 22 Ambassador Listing ...... 43 GoodSearch = GreatDonations ...... 23 Calendar of Events ...... 45 6th Annual All California Memorials and In Your Honor ...... 46 Ataxia Research Meeting (ACARM) ...... 26 Personal Stories and Poems The Last Shower Chair You’ll Buy ...... 27 Word Find ...... 28 Dancing with Ataxia ...... 23 It’s Not Too Late to Stop Smoking ...... 29 Ataxia ...... 35 Featured Board Membe r: Dr. John Day ...... 30 Alone ...... 37 Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 3

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The Dentate Nucleus in Friedreich’s Ataxia Several other iron-related proteins also Continued from page 1 showed abnormal distribution in the affected dentate nucleus. Among them, a relative because magnetic resonance imaging (MRI) newcomer, ferroportin, may be the most shows it very clearly. The high iron content important. Normally, ferroportin serves iron depresses MRI signals, and iron-rich areas of export from cells in small bowel, liver, spleen, the brain, including the dentate nuclei, resem - and bone marrow. In FRDA, ferroportin ble the negatives of old black-and-white pho - accumulates in clusters of nerve terminals that tographs (fig. 2). convey impulses from Purkinje cells in the MRI may become a useful “biomarker” for cerebellar cortex to the nerve cells of the den - disease progression and the effectiveness of tate nucleus.This unusual type of degeneration therapy. Three research groups at National in nerve terminals, now known as “grumose,” Institutes of Health in Bethesda, MD; Hôpital accompanies, or actually causes, nerve cell Necker-Enfants Malades in Paris; and Hebrew loss in the dentate nucleus. It is possible that University in Jerusalem, respectively, reported changes in ferroportin confirm abnormal that MRI detected iron accumulation in the iron-handling in the dentate nucleus of patients dentate nucleus of patients with FRDA. with FRDA. In this respect, the disease of the Surprisingly, assays of total iron and the iron- central nervous system is very different from carrying protein, ferritin, in the Albany labora - that of the heart. O tory could not confirm an excess of iron in the dentate nucleus of nine donated tissue samples Dr. Koeppen has received research support from of patients who had died from FRDA. the National Ataxia Foundation and the Nevertheless, a shift of iron from one cell type Friedreich’s Ataxia Research Alliance. His (the oligodendroglia) to a different cell type laboratory is supported, in part, by the Office of (the microglia) had occurred. Research and Development (Laboratory Medicine R&D Service) of the Department of Veterans Cerebellar Affairs. Cortex

Fig. 1. Neuroanatomy of the normal dentate nuclei. The black arrows show the two symmetrical - ly placed dentate nuclei. They are located deep within the cerebellum and beneath the cerebellar cortex. The Fig. 2. Magnetic resonance imaging of the dentate nuclei are the main way-stations for impulses normal dentate nuclei. In this matching MRI of leaving the cerebellum. Their diagonal orientation the living cerebellum, the white arrows show the confirms that their nerve fibers cross the midline to dentate nuclei as black. This appearance is due to reach the cerebral hemisphere on the opposite side. signal depression by an abundance of iron. Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 4

Page 4 Generations Sp ring 2007 NAF Research Grant Summaries The following 16 grants were funded by the National Ataxia Foundation (NAF) in late December 2006 for fiscal year 2007.

Ilya Bezprozvanny, PhD hypothesis that this gene is important in the cerebellar functions. The University of Texas Finally, we hypothesize that this can be Southwestern Medical Center at Dallas mutated in other patients with ataxia: to prove Deranged Calcium Signaling in SCA 3 this we will screen for mutations 50 ataxic Neurons patients with a congenital form of ataxia. The identification of this novel gene may shed light Spinocerebellar ataxia type 3 (SCA3) is a fatal on some new mechanism leading to ataxia neurodegenerative disorder. SCA is caused by and/or mental retardation. mutation in protein ataxin-3. We discovered that mutated ataxin-3 binds to and activates the Michael D. Koob, PhD type 1 inositol (1, 4, 5)-trisphosphate receptor (InsP3R1)-neuronal intracellular calcium University of Minnesota (Ca2+) release channel. Molecular Characterization of Purkinje In this grant, I propose experiments with Cell Function in Mice Carrying SCA 3 mouse model aimed to determine the Deletions of the SCA 8 Ataxia Locus importance of InsP3R1 association with mutated ataxin-3 for SCA 3 pathology. Spinocerebellar ataxia type 8 (SCA8) is an inherited neurodegenerative disease caused by Alfredo Brusco, PhD a mutation in the DNA of SCA8 patients, but the precise relationship between this mutation University of Torino and ataxia is complex and poorly understood. Identification of the Gene Responsible We have shown that the protein made from the for a Novel Form for Congenital gene that is closest to the SCA8 mutation, Cerebellar Ataxia which is called the KLHL1 gene, is only present in cells in the brain. The aim of this work is the identification of a In order to determine what function this novel gene responsible for cerebellar ataxia. We protein has in these cells, we engineered mice will study a girl affected by a congenital form of in which we removed this gene. We found that ataxia associated to mental retardation, who is removing only one of the two copies of this carrier of a cytogenetics anomaly: a trans- gene normally present in mice causes these location that led to a reciprocal exchange of mice to walk in an abnormal way, to progres - part of chromosomes X and 8. We have evi - sively lose coordination, and to have significant dence that the breakpoint on the chromosome deficits in the part of their brain that typically 8 in interrupting the candidate gene and we degenerates in ataxia patients (i.e., the cerebel - aim to prove it. lum). We also engineered mice in which we We will also add further data on the expres - removed this gene only in a critically important sion pattern in the brain to sustain the type of cell in the cerebellum (i.e., Purkinje  Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 5

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cells). These mice have all of the same abnor - lation of the activity of Group I metabotropic malities as the mice in which we deleted the receptors (mGluR1 and mGluR5). Group I gene in all of the cells in their body. This tells metabotropic glutamate receptors trigger the us that the most important functions of the release of calcium from intracellular stores and KLHL1 protein with regards to maintaining are widely distributed in the brain. These normal movement coordination are in these receptors are involved in many brain functions Purkinje cells in the cerebellum. including synaptic plasticity that underlies We predict from our experiments that the learning and memory. mGluR1 and mGluR5 mutation that causes SCA8 ataxia in humans are essential for motor control by the cerebel - may be working through a mechanism involv - lum which is required for normal walking and ing the loss of KLHL1 activity in Purkinje limb coordination. Abnormal function in this cells, and that loss of proper expression from class of glutamate receptors has been linked to even one of the two copies of the KLHL1 gene cerebellar dysfunction and ataxia. would be sufficient to cause disease. This study The aim of this research is to study whether will allow us to continue to define the precise the activity of Group I metabotropic glutamate molecular function of the KLHL1 protein in receptors is regulated by the enzyme PP2A Purkinje cells through appropriate collaborative when it contains the B regulatory subunit studies of the mice in which KLHL1 is encoded by the gene mutated in SCA12. removed and by identifying additional binding Abnormal function of these glutamate recep - interactions of this protein. tors may contribute to ataxia and cognitive abnormalities in patients with SCA12. Studies of the mechanisms by which these receptors are Elizabeth O’Hearn, MD regulated by phosphorylation may lead to new Johns Hopkins School of Medicine pharmacologic therapy for ataxia in SCA12 and Spinocerebellar Ataxia Type 12 other cerebellar disorders. (SC A12): Investigate PP2A Regulation of Group I Metabotropic Receptors Susan L. Perlman, MD David Geffen School of Medicine at UCLA Spinocerebellar ataxia type 12 (SCA12) is an autosomal dominant (AD) neurologic disorder A Multicenter Pilot Study of the in which tremor and ataxia are prominent Web-Based National Ataxia Database signs. SCA12 has been linked to a trinucleotide CAG repeat expansion mutation in the gene The Cooperative Ataxia Group (CAG), a PPP2R2B. This gene encodes a regulatory consortium of 38 North American clinical subunit of the enzyme protein phosphatase 2A investigators, has developed a standard database (PP2A). PP2A controls the phosphorylation for the ataxic disorders, to be used for: status and, therefore, the activity of many 1) studies of how specific genes affect cerebellar different proteins in the cell. The mechanisms function and cause disease; 2) the identification by which the mutation in PPP2R2B results in of new causes of ataxia (genetic and non-genet - neuronal dysfunction and degeneration in ic); and 3) the design of treatment trials for SCA12 are not known. different types of ataxia. The goal of this grant is to explore whether This database has already been adapted for the mutation in PPP2R2B results in altered phosphorylation and consequently in dysregu - Continued on page 6 Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 6

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NAF Research Grant Summaries however, rarely recapitulate the precise molec - Continued from page 5 ular cause that underlies human disease, thus limiting the development of therapeutic use in the Friedreich’s ataxia clinical trails. The options that may depend on overcoming current research plan will adapt it for use in the specific effects of each disease-causing other forms of ataxia (dominant SCA, sporadic mutation. ataxia). This will be done at multiple ataxia centers, using an on-line, Web-based, secure Accurate “humanized” mouse models of format. disease are designed to contain an entire human gene of interest and surrounding regulatory regions, and also harbor the specific disease- Joseph P. Sarsero, PhD (B.Sc. Honrs) causing mutation as found in patients. Such Murdoch Children’s Research Institute mice do not only manifest the main traits or Generation of Improved Mouse symptoms of a disorder, but also provide the Models of Friedreich’s Ataxia correct underlying molecular cause of the for Pharmacological Testing disease as found in patients. We have made significant headway in the Friedreich’s ataxia is an inherited disorder of generation of humanized mouse models of FA the nervous system and heart. The genetic containing the entire human Friedreich’s ataxia defect that causes Friedreich’s ataxia results in gene with a disease-causing alteration. In this reduced levels of an essential protein termed project we propose to improve our current frataxin in all cells of the body. Using informa - Friedreich’s ataxia mouse models so that they tion and resources generated as part of the more accurately reflect appropriate disease Human Genome Project, we have developed symptoms. We shall then test newly identified new techniques to study human gene expres - pharmacological agents on these improved sion in cellular and animal systems. Our aim is mouse models. Any compounds which are able to identify and develop new pharmacological to alleviate the symptoms of Friedreich’s ataxia approaches for the restoration of Friedreich’s in the mice have a great chance of acting in a ataxia gene expression and the therapy of positive manner in persons with Friedreich’s Friedreich’s ataxia. ataxia. We have identified a number of agents that are able to increase the expression of the Joseph P. Sarsero, PhD (B.Sc. Honors) Friedreich’s ataxia gene and are in the process Murdoch Childrens Research Institute of screening many currently approved drugs for their effects on the Friedreich’s ataxia gene. Regulatory analysis of Friedreich’s Prior to evaluating new therapies in patients Ataxia Locus using BAC Genomic it is important that they be tested in appropri - Reports ate biological models of the disease. Animal models of human disease that are generated Friedreich’s ataxia is an inherited disorder of by the “knockout” of specific genes often the nervous system and heart. The genetic manifest the main traits or symptoms of the defect that causes Friedreich’s ataxia results in corresponding human disorder. Thus, they reduced levels of an essential protein termed have proved invaluable in the understanding of frataxin in all cells of the body. Understanding the role of various genes and the development the mechanisms that control the expression of of many therapeutic strategies. Such models, the Friedreich’s ataxia gene would enable  Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 7

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the development of therapeutic applications by Sian D. Spacey, MD indicating ways in which to specifically target the increased expression of the Friedreich’s University of British Columbia ataxia gene in persons with Friedreich’s ataxia. The Role of the Human P/Q Type Our aim is to identify and develop new Calcium Channel in the Pathogenesis pharmacological approaches for the restoration of Ataxia of Friedreich’s ataxia gene expression and the therapy of Friedreich’s ataxia. Using informa - There are many causes of ataxia and yet the tion and resources generated as part of the end result is a pathological involvement of the Human Genome Project we have developed cerebellum. There are currently no treatments new techniques to study human gene for cerebellar ataxia. In order to develop treat - expression in cellular and animal systems. A ment it is important to understand the combination of computer analysis and pathogenic mechanisms which lead to cerebel - lab-based experimentation is being undertaken lar ataxia. The hereditary ataxias are a good to decipher Friedreich ataxia gene control mode for studying pathological processes. mechanisms. We propose to study Episodic Ataxia type 2 (EA 2) a hereditary form of ataxia which results Hayla K. Sluss, PhD from mutations in the CACNA1A gene which University of Mass. Medical School codes for the Cav2.1 subunit of the P/Q type calcium channel. Examination of the Underlying The H1736L missense mutation in the Mechanism of p53 Mediation of the CACNA1A genen causes pure cerebellar Ataxia-Telangiectasia Mutant (ATM) symptoms and cerebellar pathology. The Signaling Pathway mutated P/Q-type Ca channel is expressed widely throughout the brain, yet only cerebel - This study will perform motor control tests lar symptoms develop. We intend to investigate on the p53 phosphorylation defective mice to how a widely expressed mutation would result test whether they have the same locomotor in isolated clinical pathology. defects found in the ATM deficient mice. If We hypothesize that although the P/Q chan - they exhibit the same defects, it suggest that nel is expressed thoughout the brain, there are phosphorylation of p53 is important in this normal variants of the channel (splice variants) process. which are differentially expressed in different These experiments will help look at the regions of the brain. In this study we will deter - underlying mechanism of neurodegeneration mine the relative expression levels of splice and tumor formation in ATM-deficient mice. variants in different areas of the brain. We hope that as a model for the A-T disease Furthermore, we hypothesize that inter- our findings improve our understanding of the actions between these variants and mutations molecular function of ATM in AT disease. will influence the channel function (biophysical properties). In this study we will assess the biophysical properties of naturally-occurring The deadline for the P/Q-Type Ca channel mutants when expressed Summer issue of Generations in different isoforms of Cav2.1. Specific splice is Friday, May 18 Continued on page 8 Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 8

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NAF Research Grant Summaries interactions with ubiquitin chains and other Continued from page 7 proteins are not well understood. Most impor - tantly, it is not clear how an expanded polyQ variants may enhance or negate the effects of region alters the activity of ataxin-3, and how any given point mutation. Moreover, a muta - this alteration leads to neurodegeneration. We tion in one splice variant may yield a phenotype that is significantly different that the same recently identified specific ubiquitin chains that mutation in another variant. This may account are the preferred target of ataxin-3, and we for the localized CNS pathology. must investigate the effects of polyglutamine expansion on binding and cleavage of these This research will further elucidate the patho - chains. physiological mechanism involved in EA2. Insight into the cerebellar specific pathology In the proposed work, we will test the associated with the widely expressed hypothesis that expanded polyglutamine region CACANA1A mutations will have application alters AT3 Ub chain cleavage and binding to understanding cerebellar ataxia in general properties, as well as its interactions with other and ultimately directed us towards treatment of cellular proteins. We anticipate that our results ataxia. will answer important basic biological questions about AT3 function in cells, and we may be applicable to other plygultamine diseases as Sue M. Travis, PhD well. University of Iowa Effects of Polyglutamine Expansion David A. Wassarman on Activity of Ataxin-3, the Spino- University of Wisconsin-Madison cerebellar Ataxia 3 Disease Protein A Drosophila Model of Spinocerebellar Ataxia 3, also known as Ataxia-Telangiectasia Machado-Joseph Disease (SCA 3/MJD), may be the most common dominantly inherited Ataxia-Telangiectasia (A-T) is a recessive ataxia. It is one of several neurodegenerative genetic disorder associated with progressive disorders that are caused by the expression of neurodegeneration. The gene responsible for mutant proteins containing an expanded poly- A-T, ATM (A-T mutated) encodes a protein glutamine region. The SCA 3 gene encodes the kinase that plays a central role in the response to protein ataxin-3, but little is known about atax - DNA damage in humans and other animals, in-3 function in cells, and how it is affected by including Drosophila. Cells derived from A-T expansion of the polyglutamine region. Ataxin- patients exhibit chromosomal instability and 3 has been shown to be a deubiquitinating hypersensivity to DNA damaging agents. ATM enzyme that may have a role in the ubiquitin responds to DNA damage by phosphorylation proteasome protein degradation pathway. It of proteins that regulate the DNA repair, cell binds polyubiquitin chains through its ubiquitin cycle, and apoptosis machineries. interacting domain and it cleaves these chains Despite these advances in our understanding through its protease catalytic domain. In addi - of ATM activities, there is no convincing expla - tion, ataxin-3 interacts with other cellular ubiq - nation for how ATM protects neurons from uitin binding proteins, and these interactions degeneration. Furthermore, there is no whole may regulate or mediate ataxin-3 activity. animal system to study degeneration of ATM- The physiological functions of attain-3 and its deficient neurons. These shortfalls have  Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 9

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prevented the development of therapies for the CAG trinucleotide repeats in coding regions of most debilitation clinical manifestation of A-T the DNA in autosomal dominant spinocere - neuromotor dysfunction. bellar ataxia (SCA) 1, 2, 3, 6 and 7 marked the The goal of this project is to identify genes beginning of a new area in ataxia research. that work in partnership with ATM to protect CAG codes for the amino acid glutamine, thus neurons from regeneration. While much has these disorders are also called polyglutamine been learned about how the ATM protein disorders and research has focused on the functions in cells with DNA damage, there in effects of expanded glutamine stretches in the no convincing explanation for why loss of the encoded proteins, which tend to aggregate in ATM protein leads to neurodegeneration. the cell, especially in the nerve cell’s nucleus We have chosen to address this issue by using where so called neuronal intranuclear inclu - the power of fruit fly genetics. We have created sions are found in specific brain regions. flies in which neurodegeneration occurs in the The same type of mutation in different genes, fly eye as a consequence of reduced levels of coding for different proteins, underlies several ATM. We have found that the severity of neu - distinct diseases, thus not only the expanded rodegeneration is sensitive to mutations in glutamine stretches but also the individual gene genes that function while mutant genes that and the function of the affected protein are reduce the severity of neurodegeneration important determinants of the disease. In a cell, would be expected to encode proteins that pro - proteins are not simply manufactured and put mote degeneration of neurons with reduced into usage but modified like a car according to ATM function. the buyers demand. In addition, as some cars are A preliminary screen of 650 mutants has modified by their drivers to gain more speed, identified known components of the ATM sig - proteins are modified to fulfill certain demands. naling pathway that responds to DNA damage A common modification is called phospho - as suppressors of the ATM RNAi phenotype, rylation, i.e., extra phosphor is added to the validating this approach for understanding the protein to govern intracellular trafficking, genetic basis of A-T. increase or decrease certain functions or in some We propose to continue this screen to identi - cases determine the protein’s lifetime (like a fy the complete roster of genetics that modify wheel clamp or a signal for a tow vehicle). In the ability of ATM to protect neurons from SCA1, phosphorylation has been shown to be degeneration. The study is significant because important for the disease process. it may define targets for drugs that prevent We investigate the most common ataxia in neuron loss in A-T. the U.S. and Europe, SCA3. Nothing is known about phosphorylation in the disease Prof. Dr. Med. U. Wullner, MD, PhD protein, Ataxin3 (AT3) and whether one could work on this phosphorylation process to allevi - University of Bonn ate the disease. We thus started to analyze the Phosphorylation of Ataxin3- phosphorylation status of AT3 and identified Implication for Cellular Localization the particular positions in the protein which are and Viability phosphorylated. Extra phosphor could be of critical importance for nuclear localization, The degenerative ataxias comprise a number thus only phosphorylated AT3 protein may get of heterogeneous diseases, many of which are genetically determined. The identification of Continued on page 10 Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 10

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NAF Research Grant Summaries lar cause of the Friedreich’s ataxia. The abnor - Continued from page 9 mal GAA structure blocks the expression of the FRDA gene leading to the frataxin deficiency. into the nucleus to form intranuclear aggre - My goal is to analyze DNA structures that are gates which are believed to be critical for the formed by GAA repeats of different lengths disease to develop. and to determine how these structures affect The funded study supports an additional PhD the expression of the gene in living cells. I have student to investigate the effect of phosphory - designed a high-throughput system capable of lation on cellular transport of the expanded dis - screening thousands of chemical compounds in ease protein AT3, the occurrence of neuronal the search for new drugs. These drugs would intranuclear inclusions and the lifetime of AT3. target and destroy the abnormal GAA struc - tures and therefore restore the production of YOUNG INVESTIGATOR AWARD the frataxin in the cells of FRDA patients. Marek Napierala, PhD These studies are intended to advance our knowledge about the molecular basis of the Institute of Biosciences and Technology- Center for Genome Research FRDA and apply this knowledge to the future therapeutic strategies. DNA Structure of GAA*TTC Repeats as a Target for Friedreich’s Ataxia Therapy RESEARCH FELLOWSHIP AWARD /POST DOC Friedreich’s ataxia (FRDA) is a severe genetic Marija Cvetanovic, PhD disorder affecting approximately one in 50,000 Northwestern University people in the Unites States. The most common Molecular Mechanism of FRDA symptoms include muscle weakness and Transcription Alterations in SCA 1 loss of coordination, vision impairment, hear - ing loss, heart muscle abnormalities, scoliosis, Spinocerebellar ataxia1 (SCA1) is a devastat - and diabetes. First symptoms can usually be ing dominantly inherited disease that causes noticed between the ages of five and 15 and progressive loss of coordination and death due they progressively worsen. to pulmonary failure. It is caused by polyglu - The underlying cause of FRDA is a mutation tamine stretch expansion in protein ataxin-1, in the FRDA gene, specifically, in the fragment which is toxic to neurons. containing repeated runs of the GAA sequence Molecular mechanism of ataxin-1 toxicity is (GuanineAdenineAdenine). Unaffected indi - still unclear. Previous studies have established viduals have up to 30 tandemly repeated copies transcriptional misregulation as the earliest of the GAA sequence, while in the Friedreich’s detectable change in SCA1. We envision atax - ataxia patients this sequence can be elongated in-1 induced transcriptional misregulation in up to 1,700 copies. The consequence of SCA1 to be underlying cause of neuronal this elongation is decreased production of the toxicity. We hypothesize that ataxin-1 regulate protein called frataxin. transcription via modification of histone Biochemical studies have shown that elongat - acetylation. Indeed, in this regard, we have ed GAA repeats adopt abnormal DNA struc - already found that cerebella from SCA-1 mice tures. This length-dependent change in DNA have decreased global levels of acetylated structure is thought to be the primary molecu - histones, suggestive of inhibited  Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 11

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transcription. In this grant, we propose to fur - use cellular and animal models to understand ther explore the role of ataxin-1 in modulating how and why the cleavage and translocation histone acetylation, both in vitro and in vivo and happen and how this causes SCA 6. correlate these properties with neurotoxicity. We hope that our result will help identify the RESEARCH FELLOWSHIP molecular mechanism that underlies neurode - AWARD /POST DOC generation in SCA1, eventually leading to Elisabeth Soragni, PhD design of rational therapies. The Scripps Research Institute RESEARCH FELLOWSHIP Development of Histone Deacetylase AWARD /POST DOC Inhibitors as Therapeutics for Friedreich’s Ataxia Yuanxin Hu, PhD The University of Chicago Friedreich’s ataxia (FRDA) is caused by tran - The Role of P/Q Calcium Channel scriptional repression of the FXN gene encod - Fragments in SCA 6 Pathogenesis ing the essential protein frataxin. This defect is caused by the expansion of a simple repetitive Calcium channels are specialized proteins DNA sequence in the gene that causes the that allow calcium or other ions to cross nerve gene to shut down. In consequence of this cell membranes. They are necessary for normal expansion, frataxin protein is not expressed at functions in the brain. Many brain disorders sufficient levels, hence the neurological symp - result from the dysfunction of these channels. toms and the accumulation of iron in the heart Neurodegenerative diseases in which ion chan - of FRDA patients. nel dysfunction plays a role include Parkinson’s Currently there is no effective treatment for disease, the familial hemiplegics migraine, FRDA. Antioxidants and iron chelators have episodic ataxia type 2 (EA 2) , and spinocere - been tested in preclinical studies and clinical bellar ataxia type 6 (SCA6). The last of these trials and have proven to achieve limited suc - diseases is caused by dysfunction of P/Q-type cess in alleviating symptoms. We believe that a Ca2+ channel protein. All proteins are made of more effective therapeutic strategy would be to chains of different amino acids. SCA 6 is restore normal levels of frataxin protein. To caused by a mutation that increases in the this purpose we developed a library of numbers of the amino-acid glutamine in the molecules that can activate FXN transcription part of the amino acid chain forming the tail and increase frataxin protein in cell culture. (called the C-terminus) of the main channel We intend to further develop our library to protein subunit of the P/Q-type Ca2+ channel achieve maximal effectiveness and wish to (called the alpha 1A subunit). The result of this understand the mode of action of these com - expansion is Purkinje cell death. pounds at a molecular level. We demonstrated Our recent data shows that the tail (C termi - that these molecules reach the brain when nus) of the 1A subunit protein is cleaved administered to normal mice and exhibit no (chopped off) in the cell, possible by one of a acute toxicity. We will use mouse models for class of enzymes called proteases. After cleavage the disease to establish whether our molecules the C-terminus tail contains the mutant poly- are able to increase the levels of frataxin in the glutamine expansion and localities to the nucle - mouse brain and relieve the symptoms of the us, it causes cell death. In this study we hope to disease in mice. O Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 12

Page 12 Generations Sp ring 2007 Car egiver’s Cor ner

NAF has permission to reprint the following excerpts from the “The Comfort of Home” series. Travel with Mobility Challenges • Call ahead to the airline, bus, or train A Good Time Can Be Had by All station if you will need assistance getting the person onboard. Traveling with someone who has mobility challenges or a chronic health condition Keep it Light! requires careful planning before leaving on a Avoid changes in daily routine as much as trip. To prevent problems during travel – possible and travel at the time of day when the • Tell the person’s primary care doctor person is normally the most relaxed. Allow about the trip. Ask if there are any special care extra time for travel and rest, without too many needs to prepare in advance or during travel. activities. • If going to a foreign country, ask the doc - Traveling with Medications tor about immunizations . Pack the medications the person in your care • Check the insurance policy to see what takes on a regular basis. All medications in any emergencies are covered. Is medical equipment form or type and associated supplies are insured if it gets lost or stolen? Is evacuation for allowed through airport security checkpoint medical reasons covered? once they have been screened. • Take the person’s health insurance • List all the medications the person takes card. Write the primary care doctor’s phone and why, with brand and generic names. Keep number on the card and the date of the one copy in your suitcase and another in your last tetanus shot . Take the insurance benefits carry-on. booklet. Consider buying travel insurance , • Bring enough medications to last the entire but be sure to read the policy carefully, includ - trip – plus some extra. Keep the medications ing the fine print. with you at all times. Don’t check them. • If you spend money for medical care, med - • Keep the medications in the original ications, or equipment during the trip, keep all containers with the original prescription labels. receipts to get reimbursed. • Make arrangements for refrigerating • If the person is going to need medical care medications, if needed. after arriving, make an appointment with a Driving After a Stroke doctor in the new location before you leave A stroke can damage the areas of the brain home. that control the ability to drive. Perception, • Carry a card with the phone numbers of decision-making reflexes, and the ability to people to contact in case of emergency. control muscles may be affected. Eyesight can • Consider taking a portable grab bar for get worse, and there might be partial paralysis, bathrooms. making it dangerous to drive after a stroke. A • Tell the travel agent or airline if the person person should not drive if he or she: will need a wheelchair , and have it marked on • Drives too fast or too slow for road condi - the tickets. tions • Tell the airline about any special food • Needs help or instructions from passengers considerations. • Doesn’t see road signs and signals  Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 13

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Coffee Does Not Increase Risk of High Blood Pressure Worried about you coffee intake? The study found that women who drank six or The Journal of the American Medical more cups of coffee per day still did not have a Association recently reported that drinking large higher risk for elevated blood pressure. quantities of soda that contains caffeine might Drinking soda, however, was associated with a increase the risk for heart attacks and strokes higher risk for elevated blood pressure. in women as compared to women who drink The study ran for 12 years, and more than coffee with caffeine. 150,000 women participated.

• Makes slow or poor decisions about • Hand controls distance • Wheelchair lifts and restraint systems for • Gets easily frustrated or confused minivans • Gets lost, even in familiar areas Nonprofit agencies and insurance companies • Drifts into the opposite lane will sometimes pay for vehicle modifications. Resources for You National Highway Transportation Safety Taking Care of Yourself: Administration at 1-888-327-4236 or Getting a Better Nights Sleep www.nhtsa.dot.gov (type “stroke” in the search Caregivers sometimes have trouble falling, or window). Free pamphlet available: “Driving staying, asleep. This could happen occasionally When You Have Had a Stroke.” or on a regular basis, especially with people The Transportation Safety Administration over age 65. Helpful tips: has developed a free pocket guide, “Screening • Don’t go to bed until sleepy. Tips for People with Disabilities who Travel.” • Don’t stay in bed if you can’t sleep, but TSA says it has trained airport screeners to rather get up for a while. ensure “effective, safe, comfortable, dignified, • Avoid stimulation like action shows and and respectful screening at all TSA security news on TV before bedtime. checkpoints.” • Go to bed and get up at the same time For a free copy, call (203) 744-0100 and ask every day. for Information Services Department. • Take a warm bath before bed. NOTE: Many states ensure transportation to • Have warm milk or herbal tea, and a bed - necessary medical care for Medicaid recipients. time snack. Check with your local Medicaid office to see if • Avoid caffeine and alcohol before bed. you qualify. • Get some exercise every day. Adapting a Vehicle • Remove digital clocks and other distracting Vehicles can be adapted for someone with a or blinking lights in the bedroom. disability, including: • See a doctor if there is an ongoing sleep • A spinner knob for the steering wheel to problem. enable one-handed driving (check with the Sou rce: Journal of Sleep Medicine; October 2006; DMV to see if this is legal in your state) Article by Dr. Daniel J. Buysse, University of • A left-foot gas pedal for people who cannot Pittsburgh and www.well.com/user/mick/ use their right foot insomnia /. (Site lists 41 remedies for insomnia.) O Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 14

Page 14 Generations Sp ring 2007

Oh My Aching Back! Following Simple Back Care Rules Helps NAF has permission to reprint the following excerpts from the “The Comfort of Home” series. Sometimes as a caregiver, you will have to • To create a base of support, stand with help the person in your care move to a chair or your feet 8 "-12" apart with one foot a half-step be asked to pick up a heavy object. Though this ahead of the other. seems like a simple maneuver, it is very easy to • Bend your knees slightly. be injured doing this and left unable to per - • Keep your spine in a neutral (normal form your caregiving duties. A little attention arched, stiff) position while lifting. to the safest way to move your body – and the person in your care – will keep you from unnecessary injury. Most muscle strain injuries to both the caregiver and care receiver are pre - ventable if you follow some simple rules. Body Mechanics The proper use of our bodies is called body mechanics. It involves standing and moving in ways that prevent injury, avoid fatigue, and make the best use of strength. When you learn how to move, control and balance your own body, it’s easier to control and help or move another person. Preventing Back & Neck Pain To prevent injuries to yourself, get plenty of rest and maintain: • Good nutrition. • Physical fitness. • USE YOUR LEGS instead of your back to • Good body mechanics. do most of the work – leg muscles are stronger • A stress management program such as daily than back muscles. meditation. • If you can adjust the bed, keep the top at • A stretching routine before you lift. about waist level. If it is low or you are tall, put • A back strengthening exercise program. one foot on a footstool to relieve pressure on General Rules your lower back. The following hints will help you use proper Helpful Caregiver Advice body mechanics and be safe: for Moving a Person • Only lift as much as you can comfortably These pointers are for the caregiver only. Be handle. sure to get training for the steps for a specific • Always let the person you are helping move or a transfer. know what you are going to do. • Plan the lift – check the area for slipper y Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 15

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Gentle Yoga Best for Back Pain People can suffer from many degrees of Researchers then randomly assigned lower back pain. It can be a temporary prob - patients to three different groups. One group lem that can disappear after days or weeks – received 12 weekly 7 5- minute yoga classes or it can be a chronic condition lasting for specifically for patients with low-back pain and months or even years. was given instructions to practice daily. One According to the Annals of Internal Medicine , group received 12 weekly 7 5- minute sessions there are usually three different venues of aerobic strengthening and stretching exer - through which a sufferer of back pain can be cises, which had been developed by a physical treated: 1) Educating sufferers on ways to pre - therapist, and was given instructions to prac - vent back injury and deal with pain; 2) Drugs, tice daily at home. The third group was given a which usually include painkillers, anti-inflam - copy of The Back Pain Help Book , by Jim matories and muscle relaxants; 3) Exercise. Moore and colleagues. Patients were given permis sion to use drugs as needed. When it comes to exercise, health-care Interviewers then called patients after six, 12 providers have not known what types will and 26 weeks. The interviewers used standard improve patients’ con ditions in the past. In a questions and did not know which treat ments new study, the effectiveness of yoga, as patients had received. opposed to traditional exercise, and as opposed to education only, was tested. Yoga The interviewers reported that the yoga combines physical exercise with relaxation practition ers had better back function after 12 techniques and little has been known about its weeks than either the exercise or education effect on lower back pain. groups. Reports of pain were similar in all In the study, 101 patients between the ages groups at 12 weeks. At 26 weeks, yoga practi - of 20 and 64 who had visited a doctor in the tioners had better back function and less pain. past three to 15 months for chronic lower back The study found that yoga – over a period pain participated. Patients who had major ill - of three to six months – seems to be more nesses or conditions that explained the back effective than tradi tional exercise regimens or pain could not participate in the study. education-only tactics.

spots or possible tripping hazards. Wearing • Keep your shoulders relaxed. non-skid heels and soles will be safer for both • When needing to give a lot of assistance you and the person you are assisting. with transfers, tie a strong belt or a transfer belt • Tell the person what you are going to do. around the person’s waist and hold it as you • Before starting the move, count with the complete the transfer. In some situations, you person, “1-2-3.” may need a lift device, such as a Hoyer lift, to • To feel in control, get close to the person help you. you are moving or lifting. Note • Keep your back in a neutral position, knees Avoid twisting at the waist when moving the bent, weight distributed between both feet. person from bed to wheelchair. Instead of Tighten your stomach and back muscles to twisting, turn your whole body, starting with maintain a correct support position. your feet. • Use your arms to support the person. Learn to Lift! • Again, let your legs do the lifting. Seek training from a physical therapist to pro - • Turn, rather than twist, your body. vide this type of care to reduce the risk of • Breathe deeply. injury to yourself or the person in your care. O Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 16

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The National Ataxia Foundation 50th Annual Membership Meeting “The B ridge to Hope” Memphis, Tennessee — Ma rch 22-2 5, 2007

By Lori Shogren nity to meet others by type of ataxia in smaller groups, to get personal questions answered The 2007 Annual Membership Meeting was from medical professionals, and to share expe - hosted by our Mississippi Chapter and held in riences with others through the very popular Memphis, TN in March. This was the fifth Birds of a Feather sessions. Annual Membership Meeting hosted by the On Friday evening the Mississippi Chapter Mississippi Chapter. Thank you all for your hosted a ’5 0s-themed “Rock Around the efforts and congratulations on another highly Clock” hors d’ oeuvres and cake reception that successful Annual Membership Meeting. Over was well attended. At the reception, Dr. 500 people from around the world attended Lawrence Schut and Julie Schuur presented on the 50th conference. the early years of the Foundation and their Thursday, March 22, was the early adult families’ struggle with ataxia. The Schut family arrival day and featured a teen group outing to was recognized with a plaque, accepted by the Memphis Grizzlies vs. Los Angeles Lakers Dr. Lawrence Schut, for all their contributions basketball game at the FedEx Forum. It was to the Foundation, which includes the forma - great fun for all who attended. tion of NAF. Julie Schuur and Brant Kruen Breakout and workshop sessions began also received plaques and were recognized as Friday morning, providing several resourceful original board members and for their early topics such as Coping Early On-Set and Late contributions to the foundation that continues On-Set, Caregiver Coping, Exercise and today. David Crews was our DJ for the Therapy, Speech and Swallowing, Genetics, evening, which provided endless enjoyment to Nutrition, Service Dogs, Depression, Dancing this event. with Ataxia, and Adult Siblings sessions. These The general session program started Saturday topics were presented by individuals with with many new and familiar medical profes - either personal or professional experience. sionals and researchers from across the United Thank you to all the presenters for the practical States in attendance. Michael Wilensky (greater information. New Orleans area private practice) gave us Kyle Bryant was recognized and presented practical advice during his presentation entitled with a plaque at a welcome reception for his “Managing the Ataxia Patient.” Dr. Harry Orr courageous bike ride to the meeting all the way (University of Minnesota) reviewed all the from San Diego, CA. Kyle raised over $40,000 research that is being done on ataxia. Dr. Laura for ataxia research that will go towards a Ranum (University of Minnesota) presented us $100,000 translational research grant in his with her research of SCA 8. Dr. Sid Gilman honor. This research grant will be funded by (University of Michigan) talked to us about NAF and FA RA. Great job, Kyle! sporadic ataxia. Dr. Henry Paulson (University Friday afternoon gave attendees the opportu - of Iowa) gave us an update on SCA 3 /  Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 17

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Machado-Joseph disease. On Saturday Dr. Mark LeDoux (University of Tennessee afternoon, Dr. Meri Firpo (University of Health Science Center) told us about other Minnesota) let us know about stem cell movement disorders that may be present in research as it relates to furthering ataxia ataxia patients. Dr. Susan Perlman’s (David research. Dr. S.H. Subramony (University of Geffen School of Medicine at UCLA) Mississippi Medical Center and Baylor reviewed the non-experimental Issues of diag - University –Galveston) told us about the nosis and management for Friedreich’s ataxia. uncommon causes of ataxia. Dr. Robert Dr. Sarah H. Ying (John Hopkins Hospital) Wilson (University of Pennsylvania) discussed discussed eye movement abnormalities and “Experimental Therapeutics for Friedreich’s ataxia. Dr. Arnulf Koeppen (VA Medical Ataxia.” Dr. Khalaf Bushara (University of Center in Albany, NY) explained why the Minnesota) then explained ataxia and allergy to dominant ataxias are so different from each wheat, followed by Dr. Beverly Davidson other. Dr. John Day (University of Minnesota) (University of Iowa) who presented on gave the closing presentation of the conference “microRNAs in SCA1.” Saturday’s “Fabulous ’5 0s” banquet was a most enjoyable experience for all that attended. A special thank you to David Crews for his memorable Elvis show at this event. Michael Parent, NAF Executive Director, and Arnie Gruetzmacher, NAF Annual Meeting Chairperson, presented six plaques to the fol - lowing for their dedicated service to the Foundation: Arnie Gruetzmacher, Michael Parent, Dr. Arnulf Koeppen, DeNiece Roach, the NAF Mississippi Chapter, and Charlene Danielson. The 50/50 raffle was great fun, with over 70% of conference attendees participating to raise more then $2,200. Congratulations to the winners of the raffle and to the grand prize “Elvis” performs live at the Saturday banquet. winner, who graciously donated their winnings back to NAF. Many thanks to the Memphis with his “top 10” review of what we have Downtown Marriott for their silent auction learned throughout the weekend. donations of two gift certificates each valid Each day’s general session was followed by for a complimentary two-night stay at the a question and answer session facilitated by Memphis Downtown Marriott hotel. Thank Dr. Orr, Dr. Subramony, and Dr. Day which you to everyone who donated items for the included the presenters of each day. Please silent auction and to those that participated in watch future issues of Generations , where we this event, which raised approximately $3,000. will publish their talks so you all can learn what On Sunday morning the General Session they had to say. You can get a copy of these program continued with Dr. Jeremy presentations on our website, www.ataxia.org . Schmahmann (Massachusetts General Hospital) This was an excellent meeting! Thank you who presented on “The Cerebellum in again to the outstanding job done by the Behavioral Neurology and Neuropsychiatry.” Mississippi Chapte r! O Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 18

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He re is what you had to sa y.. . Quotes from the 2007 NAF 50th Annual Membership Meeting

“Excellent location!” Top Three Lists (cont.) “Thank you for coming to Memphis…many 1) Birds of a Feather thanks to EVERYONE who organized this 2) Dr. Schmahmann’s talk excellent meeting!” 3) Finally feeling “normal” amongst friends “The workshops were great!” 1) Meeting researchers and doctors 2) Updates on research “Very good. (It is) great to see such a cross 3) Meeting others section of people in both ages and stages of the disease.” 1) Breakout Sessions 2) Birds of a Feather “The general session speakers were all very 3) SCA 1 Update good. Nice variety ... you have raised the ba r!” 1) Attacking the Messenger “NAF staff was truly wonderful! Caring and 2) Exercise and Therapy givin g!” 3) Behavioral Neurology “Excellent choice of food at the banquet” 1) General Sessions “Please bring the dancing (breakout session) 2) Fellowship with friends back! Excellent!” 3) Networking and realizing you are not alone On Birds of a Feather 1) Caregiver Coping “Very useful. It was good for the group to meet 2) Fellowship times one another and give information in a small 3) Information and updates group setting to doctors doing research in the 1) Meeting new and old friends field.” 2) Hearing about the latest in research “Birds of a Feather is a keeper!” 3) Birds of a Feather “Very informative and interestin g...” 1) Sporadic 2) Eye Movement Top Three Lists 3) Uncommon Causes 1) Meeting old friends 1) Birds of a Feather 2) General Sessions 2) SCA 8 3) Breakout groups 3) All the researchers 1) Birds of a Feather 1) Banquet 2) FA talks 2) Meeting others with ataxia 3) Stem cells 3) Having converstations with doctors 1) Both evenings Thank you again to everyone who attended 2) Registration and store and especially to the outstanding job done by 3) Question and Answer Sessions the Mississippi Chapte r! O Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 19

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The NAF Board of Directors and Arizona Ataxia Support G roup would like to invite you to attend the National Ataxia Foundation 51st Annual Membership Meeting

“BlLaaszVienggas, NaevTadra a—il Mia n rchR 2 8e-3s0,e2a00r8 ch”

The newly remodeled Flamingo Hotel and Casino in Las Vegas is pleased to provide the facilities for the National Ataxia Foundation. Guest rooms are available for the special rate of $124 per night. Please be sure and make your reservations by February 22, 2008 in order to secure the special group rate. If rooms are available, the special rate will be extended three days before and three days after the meeting dates. To book your stay online go to https://www.harrahs.com/MakeReservation.do and enter the group code SFNAT8 , or if you prefer to make your reservation by phone, please call toll free 1-80 0-73 2-2111 and ask for the National Ataxia Foundation group rate. There are a limited number of ADA rooms available on a first-come, first serve basis. To reserve one of these rooms, please contact the National Ataxia Foundation at (763) 55 3- 0020 . NAF will have a limited number of shower chairs, tub bars and toilet frames available on a first-come, first-serve basis at the hotel. Join us in Las Vegas for the Annual Membership Meeting! Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 20

Page 20 Generations Sp ring 2007 NAF Giving Options Abound

There are many ways you can help support GreaterGood.com or www.iGive.com and for the important work of the National Ataxia each purchase you make a donation will be Foundation. Here are just a few: made to NAF. • Combined Federal Campaign (CFC) • Annual NAF Memberships: There are Giving: NAF’s CFC number is 1028. individual, household, professional, patron, and • United Ways: Designate your United Way gift memberships available. gifts to NAF. • Annual NAF Research Drive: Contribute • Employer Matching Gift Programs: Ask annually to the ataxia research drive in support your employer to match your donation to of important ataxia research studies. NAF. • Stock Donations: Donating appreciated • Donate your vehicle: Donate your car, securities, such as stock, to NAF. truck, or van. Contact NAF for further details. • Deferred Giving: Remember NAF in your • Shopping on the Web: Shop at www. will. • Charitable Gift Annuities: Gifting assets to NAF and receive annuity payments. • NAF Annual Meeting Fund: Donations Tell Your Story made to help support the annual membership in Generations meetings. • Host Your Own NAF Fund Raiser: Personal stories and poems are an Contact NAF for guidelines and application. important part of Generations . They give inspiration and encouragement to our • Pledging: You can pledge monthly, quar - readers. We have received many letters terly, or annually to NAF. from readers that have expressed how a • Individual Donations: Individuals who single article has changed their life or the make donations in support of NAF programs. life of someone close to them. • Volunteer: There are a number of ways you If you have something you would like to share, we would love to hear from you. can help NAF by volunteering your time and We welcome all stories and poems and talents. Contact NAF for more information. will review all submissions. Please send • Group Support: Ask your local civic your creative works to: groups to help support NAF. National Ataxia Foundation • Honors and Memorials: Remembering c/o Generations Staff 2600 Fernbrook Lane, Suite 119 and honoring family and friends. Plymouth, MN 55447 • Family Funds: Families pooling their Alternatively, you can send an e-mail to money together to support NAF programs and [email protected] . research. Please be sure to include a self- These are just a few ways you can help the addressed stamped envelope if you would like your materials returned, and include National Ataxia Foundation in providing the full name you wish to have published meaningful programs and promising research. along with your city and state. The National Ataxia Foundation is a nonprofit, The deadline for the upcoming summer tax exempt 50 1(c)(3) organization. Donations issue of Generations is May 18. made to the Foundation are tax deductible to the fullest extent of the law. O Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 21

Sp ring 2007 Generations Page 21 “The Ride” Raised Awareness, Research Funds to Fight Ataxia Northern California Man With Friedreich’s Ataxia Bikes from California to the 2007 NAF Annual Membership Meeting in Memphis, Tennessee By Ea rl M cLaughlin Kyle Bryant of Sacramento, CA rode his recumbent bike from San Diego, CA to the NAF's 50th Annual Membership Meeting in Memphis, TN to raise ataxia awareness and research funds. Kyle suffers from Fried- reich’s ataxia, but that does not keep him down. As Kyle wrote in his blog, “Those of you that know me well know that I am not willing to let it Left to right: Joel Gottesfeld, PhD, leader of the Friedreich's ataxia take over my life. Of the research team and professor of molecular biology at The Scripps thousands of people affected Research Institute; Elisabetta Soragni, PhD, Research Associate by ataxia, I am one of the in Gottesfeld’s lab and recent recipient of a NAF Research Grant; lucky few who can still get Earl McLaughlin, NAF Board Member and San Diego Ataxia around without the use of a Support Group Leader; Kyle Bryant; and Ronald Bartek, President of Friedreich’s Ataxia Research Alliance. wheelchair and I plan to take advantage of this ability for as rate donations, and even a [email protected] . It is long as I can.” challenge between NAF not too late to support Kyle’s Kyle chose San Diego to Support Groups, Chapters. efforts to raise research funds. launch from for good reason. and Ambassadors. Please make a donation to the It is home to The Scripps To congratulate Kyle on his National Ataxia Foundation Research Institute, where sig - courageous achievement, on its web site www.ataxia.org nificant research efforts are send him an e- mail at or contact the NAF. O taking place to fight Friedreich’s ataxia (FA). To find out more about The Fund Raisers Scripps Research Institute’s research work, go to its web If you are planning a information about holding a site at www.scripps.edu . fund raiser to support the fund raiser, please contact National Ataxia Foundation’s us at (763) 55 3- 0020 or Fundraising results are still important work, or would e-mail na [email protected] . being totaled, but they just like to receive more include individual and corpo - Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 22

Page 22 Generations Sp ring 2007 A Special Thank You

The National Ataxia Foundation would like this conference truly memorable and for their to extend a special thank you to all of the generous donation to NAF from five years of attendees, speakers, facilitators, exhibitors, fundraising efforts in the amount of $50,000. It was a pleasure working with Camille Daglio, President of the Mississippi Chapter, on this conference. Camille brought so many ideas and so much energy and commitment to making this event an uplifting experience for everyone. Many thanks to Lori Tally, who volunteered as our on-site nurse this year. Your services are so much appreciated. NAF would also like to thank Charlene Danielson for constructing the NAF 50th Anniversary Quilt and all those that contribut - ed a patch to the quilt. The “Bridge to Hope” conference had over 500 attendees! We appreciate your participation in making this conference so successful. Thank you so much for the wealth of information and knowledge that was brought to the conference by all the speakers, facilitators and exhibitors. The information and skills taken away from The NAF 50th Anniversary Quilt was made by this conference by the attendees is invaluable Charlene Danielson from patches submitted and worth more than any words can say. from around the country. Last but not least, thank you to the numerous volunteers at the NAF 2007 Annual Downtown Quincy Marriot and Memphis Membership Meeting held in Memphis, TN. Cook Convention Center in Memphis for The NAF would like to especially thank the their service and hospitality throughout the Mississippi Chapter for all their efforts to make event. O

NAF Pen Pal Program Many new National Ataxia Foundation mem - or mail with persons confronting the same bers may not be aware of a program specifical - disease, this international directory is for you. ly designed for them. Many years ago, the Sharing and caring is all part of being Foundation established a Pen Pal Program for involved with the NAF Pen Pal Program. Please persons with ataxia to communicate and share contact the NAF by phone at (763) 55 3- 0020 with others. or e-mail na [email protected] for a Pen Pal Program If you would like to communicate by e-mail application today. Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 23

Sp ring 2007 Generations Page 23 Dancing with Ataxia by Thomas L. Clouse, MD

Some of you took part in the breakout I can help you begin the process towards sessions I presented at the Memphis conference what I have achieved. There are no magic pills, titled “Dancing with Ataxia.” More appropri - no supportive devices or special gizmos ately it should have been entitled “Walking involved. The key is already within you. Your with Ataxia” as that was the emphasis of what I support system begins with you and resides presented. Why? Because you must have the within you; not your cane, walker or care giver. capability to walk with some coordination The determination and drive must also begin before you can dance. with you. You have to want it bad enough and I was diagnosed with SCA-14 in October work with it everyday. I am merely one of the 1997. That was the same day my career as a vehicles you will use to affect the change with - general surgeon, income, future plans and self in yourself. esteem were stripped away. Sound familiar? I If you are interested as an individual or know and live what you’re going through, belong to a support group and want to start on share your concerns, difficulties and frustra - your own journey please contact me at: tions. I, too, found myself living the diagnosis Thomas L. Clouse, MD and using it as an excuse for “what I can’t do 1604 Cheshire Circle S. and what I will never be able to do.” Like many Lehigh Acres, FL 33936 of you the condition in my head, and more [email protected] importantly, the thought processes in my mind, www.walkingwithataxia.com O began to control most of what I would attempt. My life style stemming around my ataxic walk and falls was taking its toll; as it is with you. Fortunately, I finally “woke up” and began Goo dSea rch = listening to my negative self-speaking. I tired of what I was saying to others and myself. I very Grea tDonations much disliked who I had become and set out to Have you tried the easiest way to raise make some changes. The key was to look money for the National Ataxia within myself to affect the change rather than Foundation? Simply searching the Internet pleading for a remedy from elsewhere. I found using www.GoodSearch.com raises what I needed and began taking some “steps” money for the Foundation! You use Yahoo !- powered GoodSearch to change who I had become. like any other search engine. To get start - In short, I have re-learned how to walk to ed, log on to www.GoodSearch.com and where most people are unaware of my diagno - type “NA F” in the “Who do you Good sis. It has taken almost two years of consistent Search for?” box. Each time you search work, lessons and exercises to bring me to what the Internet using GoodSearch, a dona - tion will be made to NAF. It’s that eas y! you witnessed in Memphis. I can now dance! Please use GoodSearch as your main How many of you would love to have the same search engine, but also pass this informa - capabilities again? How many of you long to tion on to your family and friends. have some of your “normal” back again? Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 24

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NAF Merchandise

BOOKS VIDEO / CD

“Ten Years to Live” by Henry Schut Ballads of a Family Man CD The story of the Schut family’s struggle with hered - A CD containing 10 songs in memory of Billa itary ataxia and the impact it had on this extended Ballard. $5 of the purchase price goes to support family. Paperback, photos. $8.75 (includes S&H) the work of the NAF. $13 (includes S&H) “Keep A Goin ’” by Jeff and Melinda Cromwell “Together there is Understandin g” Video Fifty stories about ataxians around the world. A A continuation and expansion of the NAF video portion of the proceeds goes to NA F’s research “Together There is Hope,” this 5 0-minute video program. Paperback. $13 (includes S&H) provides an in-depth look at ataxia and ataxia “Living with Ataxia” by Martha Nance, MD research. VHS $20 or DVD $25 (includes S&H) New second edition! A compassionate, easy to understand explanation and ideas on how to live SHIRTS / MISCELLANEOUS with ataxia. Paperback. $14 (includes S&H) NAF Denim Shirts ! “Healing Wounded Doctor -Patient Relationships” Denim with white embroidered NEW by Linda Hanner and contributor John J. Witek, MD NAF logo. $2 7.50 Offers demonstrations of how effective dialog can help move patients and doctors to productive 2006 Annual Meeting T -Shirt Vintage long-sleeve with “Beacon of Light” logo. relationships. Paperback. $10 (includes S&H) Sizes XL to XXX -large. $10 Friedreich’s Ataxia Research Cookbook 2005 Annual Meeting DV D or VHS Julie Karjalahti, of Savage, MN, has published this Set of 5 DVDs $75. Set of 4 VHS $50. cookbook to raise money for FA research. Recipes “Ataxia is not a foreign cab” T -Shirt s from around the United States. $ 12 (inc. S&H) White. New design. Sizes small to XXX -large. $10 “Recipes and Recollections” by Kathryn Hoefer Smith “Ataxia is not a foreign cab” Sweatshirts Full of delicious recipes and recollections. Perfect Ash colored. Sizes small to XXX -large. $20 for fund raisers. Proceeds go towards FA research. Window Clings & Bumper Stickers Paperback. $10 (includes S&H) $1 each or 6 for $5 Managing Speech & Swallowing Problems NAF Ataxia Awareness Bands by G.N. Rangamani, PdD, CCC-SLP EW! Blue. One size fits all. $2 N A basic guide to understanding and W! managing speech and /or swallowing NE NAF Ataxia Awareness Ribbon Magnets problems . $ 7.50 (includes S&H) Blue with white lettering/logo. $4

To order, call (763) 55 3-0020, fax (763) 55 3- 0167 or mail this completed form to National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447

Description Qty. Size Each Total NAME: ______ADDRESS : ______CITY ______STATE: ____ ZIP: ______PHONE : ______For credit card orders, please fill out the following information ______(you must include phone number and signature): ______CIRCLE ONE: Visa Mastercard ______NAME ON CARD: ______ORDER TOTAL: ______CARD #: ______EXP DATE : ______PLEASE ALLOW 4-6 WEEKS FOR DELIVERY SIGNATURE : ______Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 25

Sp ring 2007 Generations Page 25 Ataxia Research Update Crossing the Bridge to Hope By Harry T. Orr, PhD NAF Research Director

The bridge to hope is the bridge that links completed and phase II is awaiting FDA basic research to finding a cure for ataxia. We approval of the study. are celebrating the 50th year that the National • EPI-A0001 : Edison Pharmaceutical’s Ataxia Foundation has been a leader in pro - compound which works with mitochondrial moting ataxia research. Look how far we have dysfunction. EPI-A0001, which targets elec - come. Research on the ataxias continues to tron shuttling, energy production, and reduc - move at a strong pace. Today millions of dollars tion of oxidative stress in the mitochondria. from the National Institute of Health are spent In most cases Friedreich’s ataxia is caused by on Ataxia research and tens of genetic muta - the expansion of GAA trinucleotide repeat in tions causing ataxia are known from which we the gene encoding frataxin. This mutation is are learning how ataxia is caused. Most impor - thought to induce a change in the structure of tantly, in research we are now poised to step off the DNA at the frataxin gene so that it is no the bridge into real hope for a treatment. In longer expressed – leading to the loss of fratax - this update I would like to highlight two par - in protein seen in patients with Friedreich’s ticular examples – recent advances in ataxia. Very recently Dr. Joel Gottesfeld and Friedreich’s Ataxia research and clinical trials, colleagues from the Scripps Research Institute and efforts to move advances in the basic in San Diego reported on the discovery of a research on the SCA‘s to a clinical trial histone deacetylase (HDAC) inhibitor that can We all know that Friedreich’s ataxia is caused overcome the aberrant silencing of the frataxin by the loss of function of a protein called gene in human cells. Studies are presently frataxin. We believe this results in a decrease in underway to determine if this drug works in a the ability of mitochondria in nerve cells to mouse model of Friedreich’s ataxia. This make energy. Presently there are drugs being research has identified a key biochemical step tested in clinical trials to see if they can help in the development of Friedreich’s ataxia that nerve cells overcome the energy deficit in in the future will no doubt yield potential ther - Friedreich’s ataxia: apeutic agents for the treatment of this disease. • Idebenone : 2006 ends with phase I and II To further promote such research the of the Idebenone drug trials. These trials Friedreich’s Ataxia Research Alliance (FARA) showed that Idebenone appears safe and well and the National Ataxia Foundation (NAF) tolerated and suggested Idebenone has thera - will announce at this meeting a joint request peutic value in treating FA. This year phase III for proposals for pre-clinical investigations to of this drug study will take place. Phase III facilitate clinical trials for Friedreich’s Ataxia. studies are the final step before submission for They anticipate funding one award for one year FDA approval for a new drug. under this program. The total award is limited • MitoQ : MitoQ is an antioxidant that tar - to $100,000. gets the mitochondria and is being evaluated as a possible treatment for FA. Phase I has been Continued on page 32 Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 26

6th Annual All California Ataxia Research Meeting (ACARM)

The 6th Annual All California Ataxia Research Meeting (ACARM) will be held at Come stay at the the Hilton Irvine/Orange County Airport on Irvin e/Orange County Airport Hilton Sunday, October 14, 2007. Our recent $10 million renovation gives Our keynote speaker will be Dr. Susan us the newest rooms in Orange County Perlman. Dr. Daniel Green will be providing a non-denominational church service before the 289 spacious guest rooms, equipped meeting for those that wish to attend. with the Hilton Serenity Package We will have the complete agenda in the In-room movies, coffee maker, voice next issue of Generations . We are still confirm - mail, wireless high-speed Internet ing speakers and subjects. Award-winning Newport Bistro Restaurant The hotel has given us a special price of Olympic size swimming pool, whirlpool spa, $119 (plus taxes) for rooms two days before, fitness center, and lighted tennis court the day of, and two days after the meeting. The Hilton is providing other very special services, Hotel shuttle is wheel chair accessible so please read the hotel information at right. Complimentary transportation to restaurants The Irvine/Orange County Airport Hilton located within a three-mile radius of the hotel is located within short distances of several Complimentary transportation to Orange County attractions, including Knott’s Berry Farm ( 14 (SNA) Airport and South Coast Plaza miles), Disneyland ( 13 miles), Aquarium of the Pacific, Ports of Call, and the Queen Mary (all Book your reservation by Friday, September 28 about 18- 23 miles). to receive the $ 119.00 room rate (plus taxes) Breakfast and lunch will be included with your registration fee of $50. Registrations will For reservations, call 1-800-455-8667, be available the day of the meeting for $30, but and ask for ACARM or NAF. you will not receive breakfast and lunch.

ALL CALIFORNIA ATAXIA RESEARCH MEETING (ACARM) REGISTRATION FORM Sunday, October 14, 2007 — Irvine/Airport Hilton

Attendees’ Names (please print): Non-Refundable Payment Enclosed : ______Breakfast, Lunch & Program ______($50.00 x number attending): $ ______Voluntary Donation to NAF: $ ______

Indicate number of Box Lunches: Check Total: $ ______Chicken; ____ Beef; ___ Vegetarian

Please mail this completed form and check made payable to "M. A. Hyatt" to: ACARM#6, c/o M. A. Hyatt • 15202 Clemente St. • Westminster, CA 92683 Telephone: (714) 892-8468 Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 27

Sp ring 2007 Generations Page 27 The Last Shower Chair You’ll Buy By Earl McLaughlin impressed with its comfort, how safe I felt Those who know me know how much I love sitting in it, and its light weight that made it easy to travel. One worry I have about hotels is to move, that I asked Chris to make me one. whether or not the they have a sa fe bench Chris bought me the one pictured for less bench or chair in the shower or tub. than $25 at Wal-Mart or Target. He used a Notice the emphasis on “safe.” While every cigarette to burn holes in the seat, pushing hotel I’ve stayed at has had a bench or a chair, down so the lips of the holes do not touch my most times I felt like I was taking my life in my skin. It even came with a handy carrying case. own hands using them. Benches are often too I take it everywhere I travel. It is lightweight, far away from the shower head or controls or can be adjusted to fit in any size tub without are made of wood. Shower chairs sometimes compromising safety, and it dries quickly. have no back or are the size of a bar stool. You If you are thinking of getting a shower chair, I could bring your own chair with you, but they highly recommend one of these. O are both expensive and bulky, and the portable ones can be pretty flimsy. Because of all that, when I travel, I always try to book a room with a roll-in shower if the hotel has one and if it is available. SHOPPING Recently I stayed with my brother Charley in on the a hotel without a roll-in shower. The first WEB morning I used the hotel shower chair and I What if you could shop without leaving your home, have a vast array of stores survived. Then Charley came in with his own to choose from, no waiting in lines, no shower chair that his caregiver, Chris Nemelka, parking problems, no transportation had made for him. issues or costs, special discounts, and It was a canvas camp chair with holes in the for each purchase you make a donation seat. I used it the next four mornings and was so would be made to the National Ataxia Foundation? This might sound too good to be true, but in fact, there really is such a place. If you visit www.Greate rGood.com or www.iGive.com you will be able to shop at hundreds of stores, find brand names you know and trust, and many times receive discounts. And all of this without leaving your home ! There is one more advantage. With each purchase you make, a donation will be made to the NAF. Try these fine shopping portals This easy-to-find camp chair could be the last and have fun shoppin g! shower chair you’ll buy. Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 28

Page 28 Generations Sp ring 2007 Gener at ions Word Find Please see directions and terms at right. Answers appear on page 37 .

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Sp ring 2007 Generations Page 29 It’s Not Too Late to Stop Smoking If you’ve been thinking about quitting smok - breath decrease. ing, but you think the damage has already been • After a few weeks, circulation and lung done, take a look at the astonishing progress function improve. your body can make when y ou stop. According • A year after you quit, your risk of coronary to the Quit Smoking page at Discovery.com : heart dis ease is cut in half. • Twenty minutes after you quit, your blood • Five to 15 years after you stop smoking, pressure decreases, your pulse rate drops and the your risk of stroke has been reduced to that of temperature of your hands and feet go up. those who never smoked. • Eight hours after you quit, oxygen levels • After 10 years, your risk of ulcers lowers, increase to normal and carbon monoxide levels your risk of lung cancer is cut in half and your drop to normal. risk for other can cers also decreases. • Twenty-four hours after you quit, your risk • After 15 years, your risk of coronary heart of heart attack goes down. disease is now similar to that of people who • After one-to-nine months, coughing, have never smoked. Your risk of death is almost sinus conges tion, fatigue and shortness of the same as someone who has never smoked. O

Word Find Directions Circle the terms defined below when you find them. They can be found across, down, and diagonal. ALLELE : One of two genes responsible for a specific alternate forms (alleles) of a chromosomal locus genetic characteristic. Alleles (genes) are inherited that differ in nucleotide sequence or have variable separately, one from each parent. For instance, you numbers of repeated nucleotide units. might inherit an allele for black hair from your father FIFTIETH ANNIVERSARY : 2007 will mark the and another allele for blond hair from your mother. 50th Anniversary of the National Ataxia Foundation ATAXIA : Poor coordination. It can be used to refer HETEROZYGOUS : A descriptive word saying that to a neurologic symptom which can have many caus - two copies of the same allele are contained in the es, or to denote one of several degenerative diseases same area of the chromosome. that cause poor coordination. MARKER : An identifiable physical location of a BRIDGE TO HOPE : Theme of the 50th NAF chromosome. Annual Membership Meeting. MEMPHIS : Memphis, TN was the location of the CELL : The human body is made up of trillions of 50th NAF Annual Membership Meeting. living cells of various types: heart cells, nerve cells, bone cells and skin cells, among others. Each of these NEUROLOGY : The study of the nervous system cells are made up of thousands of parts that work and its diseases. together. The components of each cell are contained PARASYMPATHETIC NERVOUS SYSTEM : A by a cell membrane. branch of the autonomic (self-controlling) nervous CHROMOSOME : Spaghetti-like structures that system concerned with the conservation of the contain the genetic material (DNA) that determines body’s energy and resources during relaxed states. hereditary characteristics. Each cell of the human SCA : The acronym stands for spinocerebellar ataxia. body contains 23 pairs of chromosomes and each Due to knowledge gained through genetics, it is the chromosome is made up of many genes. Twenty-two current label used for dominant ataxias. It replaces of the 23 chromosomes are called autosomes. The the old labels for dominant ataxia, OPCA and 23rd pair is referred to as the sex chromosome Marie’s. SCA’s are assigned a number according to which determines the sex of the individual. the order in which the gene was found (e.g., SCA 1 DNA POLYMORPHISM : One of two or more was the first ataxia gene identified). Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 30

Page 30 Generations Sp ring 2007 Meet the NAF Board of Directors The National Ataxia It also reviews ataxia research co-chairs a committee. Foundations’s Board of proposals and makes funding The Board is made up of a Directors are volunteers who decision on these applications. diverse group of caring people. dedicate countless hours to Over the years the Board has Each member brings with help ataxia families. The Board developed a number of com - them expertise on certain is responsible for providing mittees to oversee various issues to help the Foundation’s direction and overseeing the functions of the Foundation. efforts to provide important operations of the Foundation. Each board member chairs or programs to ataxia families. O Featured Board Member of the NAF: Dr. John Da y

John W. Day, MD, PhD, is a Gillette Pediatric Specialty Professor of Neurology and Healthcare Clinic in St. Paul, Pediatrics at the University of MN. Dr. Day has collaborated Minnesota and is Medical for many years with Dr. Laura Research Liaison to the Ranum and Dr. Lawrence National Ataxia Foundation. Schut in the identification and Dr. Day also serves on NAF’s characterization of SCA5, Board of Directors and the SCA8, a variant of episodic NAF Medical and Research ataxia type 1, and other forms Advisory Board. of ataxia. Dr. Day received his Dr. Day was the key organiz - MD from the University of er of the NAF’s First Ataxia Dr. John Day Minnesota and subsequently Investigators Meeting (AIM), received a PhD in neuro - held in March 2005 in Tampa, ences to writing ataxia science from the Albert FL, and is heading up the 2008 brochures, reviewing research Einstein College of Medicine. meeting. The meeting brings proposals, and advising NAF He trained in neurology at the together many of the world’s on medical matters, Dr. Day is University of Californi a–San leading ataxia scientists and a true champion of the NAF Francisco, and has been clinicians to present current and the ataxia community. involved in the diagnosis and ataxia research findings, to The Foundation’s true care of ataxia patients for more discuss various research strength lies within the com - than 20 years. approaches, and to help accel - mitment and dedication of Dr. Day is Director of the erate ataxia research activities. people such as Dr. Day. We are Paul and Sheila Wellstone As a scientist and a clinician, stronger because of Dr. Day’s Muscular Dystrophy Center at Dr. Day provides ataxia fami - involvement and we are truly the University of Minnesota, lies with hope and understand - indebted to him for his years of where he has active ataxia and ing. The Foundation is truly service to the Foundation. His neuromuscular clinics. He also honored to have Dr. Day as dedication is truly making a cares for pediatric ataxia and part of the organization. From difference in the lives of ataxia neuromuscular patients at the organizing medical confer - families. Thank you Dr. Day. O Gen_0701:Gen_0701.qxd 07 04 17 4:27 PM Page 31

Sp ring 2007 Generations Page 31

From the Desk of the Executive Director The Foundation has reached a milestone: throusands of e-mails and hundreds of phone 50 years of dedicated service to ataxia fami - calls and letters each week, and averages lies. To celebrate the occasion, the 2007 NAF over 1,000 visitors each day on its web site, Annual Membership Meeting was held in www.ataxia.org . Memphis, TN on March 2 3- 25, hosted by the Prior to the identification of the first ataxia Mississippi Chapter. gene in 1993, publications on ataxia were At the meeting were leading ataxia scientists largely limited those on Marie’s ataxia and from around the world who presented their lat - Friedreich’s ataxia. Today, there have been est findings in ataxia research. In addition, many genes found in both the dominant and there were break-out session speakers who recessive forms, and the Foundation contin - provided valuable information on ataxia-related ues to update and develop new publications subjects, and, of course, “Birds of a Feather,” and fact sheets on the various forms of ataxia. where people with the same concerns could Technical landmarks over the past 50 years gather to learn and share. include NA F’s first computer purchase in There was also great entertainment including 1985, NAF going o n- line with its Ataxia Bulletin a ’50 s-theme reception. Even Elvis was in the Board and E-NAF in 1993, and the launch of building! One of many highlights included the www.ataxia.org in 1995. Mississippi Chapter presenting the NAF with a Volunteers have played an essential role check for $50,000, signifying the 50 years throughout the history of the organization. NAF has been in existence. If you missed this NA F’s first Executive Director was not hired year’s meeting, start making plans to attend until 1973. Board members, medical and next year’s event in Las Vegas, NV. research advisory board members, chapter Looking back over the past 50 years, the and support group leaders, ambassadors, Foundation has seen many changes. NA F’s office and event volunteers, and volunteer first newsletter, Lighthouse News , was intro - members continue to play a crucial role in duced in 1972 and had a regional subscriber giving help and hope to ataxia families. list of approximately 100. Today, NA F’s quar - Back in the ’5 0s, with annual budgets of two terly publication, Generations , has a worldwide to three thousand dollars, there were narrowly readership of more than 30,000 people. defined limits on the ability to support mean - NA F’s research program has also seen sig - ingful research and provide ataxia publica - nificant changes. In the 1970’s only one or tions. Today, because of the generosity of our two research studies were funded each year in caring donors, the Foundation is able to sup - the U.S. In contrast, 34 studies were funded port promising ataxia research and to be a worldwide from Dec. 2005 through Dec. 2006. world leader in ataxia publications. NA F’s research program started out with one NA F’s logo was created back in 1975 and program called the NAF Research “Seed- has remained the same since that time. Money” Program. Today there are three Another fundamental which has remained con - research programs including the NAF Research stant is the basic principle on which the Program, the NAF Research Fellowship Award, Foundation was founded: giving help and hope established in 2000, and the NAF Young to ataxia families. The Foundation is here to Investigator Award, established in 2001. find answers by supporting promising research In 1957 the Foundation started with fewer studies, providing current and accurate infor - than 10 members. In 2006 NAF saw more mation, and giving support. than a 50% increase in membership support. Much has changed over the years, but NA F’s In the early days, most communication was ideology and philosophy of dedication to ataxia done through the mail. Today, NAF receives families have and will remain the same. Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 32

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Crossing the Bridge to Hope therapeutic development by drawing on the Continued from page 25 expertise of experts from other fields. In addition to the research studies listed In the SCA‘s significant advances have been above, here are some of the other recent studies made in understanding the molecular patho - that are going on around the world, many of genesis of these disorders. We are all very these funded by NAF: acutely aware that although the gene mutations are known for several of the SCA‘s, there • FRDA, Sticky DNA, Transcription inhibition, and the Polyamide Reversal of remains no curative treatment for this debilitat - this inhibition. Institutions/Authors: Institute ing class of disorders. Genetic therapeutic of Biosciences and Technology, Center for approaches have been undertaken in animal Genome Research, Texas A&M University/ models for some of the SCA’s. Experimental Robert Wells. evidence suggests transcriptional regulation, • Deranged Calcium Signaling in SCA 3 protein aggregation and clearance, the ubiqui - Neurons. Institutions/Authors: University of tin-proteasome system, and alterations of Texas Southwestern Medical Center at calcium homeostasis may all be involved in the Dallas/Ilya Bezprozvanny. neuronal dysfunction and loss that underlies • Overcoming the transcription defect these disorders. Targeting these pathways may in Friedreich’s ataxia with designed DNA yield various therapeutic alternatives. In ligands. Institutions/Authors: Universite Libre addition to the work on animal models of the de Bruxelles, Belgium/M. Rai, and M. SCA’s, important advances have been made at Pandolfo. Scripp Research Institute, La Jolla, the genetic level. For example, it has been CA/Gottesfeld, California Institute of demonstrated in transgenic mice that the Technology, Pasadena, CA/ P. Dervan and M. mutant phenotype can be reversed by decreas - Pandolfo. ing the expression of the mutant protein. This • Molecular Characterization of proof-of-concept animal work highlights the Purkinji cell function in mice carrying opportunities for translational research in this deletions of the SCA 8 ataxia locus. field. Institutions/Authors: University of MN/ To further promote the movement of Michael D. Koob. advances made in research laboratories to • Histone Deacetylase inhibitors developing a clinical trial for the SCA, a NIH Reverse Gene Silencing in Friedreich’s Ataxia. Institutions/Authors: Scripps Research sponsored workshop will be held specifically to Institute, LaJolla, CA/ David Herman, Kai address how to translate the basic research find - Jenssen, Ryan Burnett, Elisabeth Soragni. ings. By bringing leaders in the basic science UCLA, Los, Angeles, CA/ Susan L. Perlman. together with leaders in the various therapeutic • Spinocerebellar Ataxia type 12 (SCA approaches under consideration as well as 12): Investigate PP2A regulation of Group experts from other diseases, this workshop will I metabotropic receptors. Institutions/ discuss these roadblocks and develop scientific Authors: John Hopkins School of strategies to resolve these issues. In addition, Medicine/Elizabeth O’Hearn. in preparation for future trials, the currently • Novel, complex interruptions of the available scales will be critically assessed, and GAA repeats in the small expanded alleles outcome measures for future trials will be of two affected siblings with a mild, late discussed. Not only with this workshop foster onset form of Friedreich’s ataxia. collaboration in the SCA field, it will offer Institutions/Authors: University of Pennsylvania, an opportunity to develop a strategic plan for Children’s Hospital of Philadelphia/  Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 33

Sp ring 2007 Generations Page 33

D.R. Lynch, E.C. Frackelton, J. McCallum, Koeppen-Susan C. Michael. Centre J.M. Farmer, A. Tsou, A. Santani, C.M. Hospitalier Universitaire, Sherbrook, QC, Mulcahy, C.A. Stolle. Canada/ Jacques B. Lamarche, Jiang Qian. • Molecular Characterization of a Novel • Gene expression studies in heart and Case of Friedreich’s ataxia. Institutions/ skeletal muscle of frataxin deficient mice. Authors: Murdoch Childrens Research Institutions/Authors: University of California at Institute, Royal Children’s Hospital, Australia Los Angeles/Giovanni Coppola, Maren and University of Melbourne, Royal Engelhardt, Matthew Suberlak, Eric Wexler. Children’s Hospital, Australia / Novita Manuela Santos, Massimo Pandolfo, Daniel Puspasari, Lingli Li, Timothy P. Holloway, Geschwind. Louise Corben, Michael Fahey, Martin • Drosophila frataxin prevents oxida - Delatycki, Joseph P. Sarsero. University of tive-stress inactivation of mitochondrial Melbourne, Royal Children’s Hospital, aconitase. Institutions/Authors: Universitat de Australia. Valencia, Valencia, Spain/Jose V. Llorens, Juan • Generation of improved mouse A. Navarro, Maria Molto. University of models of Friedreich’s ataxia for pharma - Regensburg, Regensburg, Germany/ Juan cologic testing. Institutions/Authors: Murdoch Navarro, Jose Botella, M. Jose Martinez- Children’s Research Institute/ Joseph P. Sebastian, Stephan Schneuwly. Sarsero. • Development of CoQ10 Analogs for • A functional pool of extramitochon - the Treatment of Respiratory Chain drial frataxin. Institutions/Authors: University Diseases. Institutions/Authors: Edison of Rome Tor Vergata/ Ivano Condo, Natascia Pharmaceuticals/ Guy Miller, William Shrader, Ventura, Florence Malisan, Barbara Tomassini, Patrice Rioux. Robert Testi. Rational selection of Friedreich’s • Effects of Polyglutamine Expansion • on Activity of Ataxin-3, the spinocerebel - ataxia therapeutics. Institutions/Authors: lar Ataxia 3 Disease Protein. Institutions/ University of Mississippi, LA and the Authors: University of Iowa/ Sue M. Travis. University of Louisville/ LaKechia Grant, Jun • Phosohorylation of Ataxin 3- implica - Sun, Hongzhi Xu, S.H. Subramony, Jonathan tion for cellular localization and viability. Chaires, Michael Hebert. Institutions/Authors: University of Bonn/Med. • Antioxidant Use in Friedreich’s U. Wullner. Ataxia. Institutions/Authors: University of • DNA structure of GAA*TTC repeats Pennsylvania, Children’s Hospital of as a target for Friedreich’s ataxia therapy. Philadelphia, University of California, Los Institutions/Authors: Institute of Biosciences and Angeles, University of Mississippi, University Technology-Center for Genome Research/ of Minnesota, University of Iowa, University Marek Napierala. of Texas, Emory University/ David Lynch, • Molecular mechanism of transcription Jennifer Farmer, Robert Wilson, Amy Tsou, alterations in SCA 1. Institutions/Authors: Susan Perlman, S.H. Subramony, Christopher Northwestern University/Marija Cvetanovic. Gomez, Katherine Mathews, Tetsuo Ashizawa, • The role of P/Q calcium channel frag - George Wilmot, Laura Balcer. ments in SCA 6 pathogenesis. Institutions/ This is a very limited list of the many research Authors: University of Chicago/ Yuanxin Hu. studies that are going on worldwide. • Iron in the cardiomyopathy of To learn more about the National Ataxia Friedreich’s ataxia. Institutions/Authors: Foundation’s current research efforts, please Albany Medical College, Albany, N.Y./Arnulf visit our web site at www.ataxia.org . O Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 34

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The Michael and Pat ricia Clementz Family Endowment Fund for SCA 3 Research

The National Ataxia Foundation is pleased to In April the National Institute of Health (NIH) announce the establishment of The Michael will be sponsoring a two-day conference to and Patricia Clementz Family Endowment Fund further promote advances made in the for SCA 3 Research. Recently, the Clementz research laboratories in developing strategies family donated more than one million dollars for clinical trials for the SCAs. By drawing on to the National Ataxia Foundation for the experts in the ataxia field and in other fields, establishment of this fund. the conference, at which the National Ataxia The purpose of the fund is to enhance the Foundation will be represented, will offer an mission and purpose of the National Ataxia opportunity to help in the development of a Foundation through funding additional promis - strategic plan for therapeutic developments in ing SCA 3 research studies and in supporting the SCAs. promising potential therapies in the develop - The Michael and Patricia Clementz Family ment of effective treatments and cure for the Endowment Fund for SCA 3 Research will help SCAs, including SCA 3. play a vital part in supporting the findings This donation has been the largest single made at the conference and in supporting donation in the history of the National Ataxia crucial SCA 3 research. The National Ataxia Foundation. The Foundation is overwhelmed Foundation is honored and humbled by the by the generosity of Michael and Patricia continued generosity of the Clementz family. Clementz and their family in the establishment Their commitment has made a lasting impact of this important Fund. It is because of on the field of ataxia research and on the atax - wonderful and generous families like the ia community. The Foundation is truly grateful Clementz family which gives us hope for today for their kindness, generosity, and commit - and a promise for a brighter future. ment. Thank you!

Pu ll a Fa st One If you are interested in helping ataxia research on Your Mind by donation of tissue after death, please contact When your mind locks onto a particular Dr. Arnulf Koeppen for thought, ask yourself “Wh y?” information and details. What is it about this particular subject that Arnulf Koeppen, MD has meaning in your life? Professor of Neurology Is there something you need to do or pay VA Medical Center attention to? 113 Holland Ave. Taking this tactic is often more helpful than Albany, NY 12208 trying to shut the thought out of your mind, Phone: 518.626.6373 Fax: 518.626.6369 which often results in even more focus on the E-mail: Arnulf.Koeppe n@ med.va.gov unwanted thought. O Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 35

Sp ring 2007 Generations Page 35 Pennies from Heaven

By The Magnuson Family

It was a blessing to be a part of our first ever collected “Pennies from Heaven” to coincide National Ataxia Awareness Day in Southern with this event. A school mom, Warunee Florida. This idea was from our ladies group at Thitisupudom, had a jar at her restaurant, Siam our church, First Christian of Pompano Beach, One in Boca Raton, collecting pennies, too. FL. They held a “pot luck” luncheon on the The Deerfield Beach Post Office was also Sunday before the date. At the luncheon, they involved with the collection of donations. sold bracelets, buttons, jewelry and desserts. We are proud to send $2,316.50 to NAF. Families made donations as well. Our family has designated these funds to Our pre-school, First Christian Day School, Friedreich’s Ataxia Research. O

By James Curtis, Atlanta, GA ataxia Ataxia comes from the Greek word meaning without order, Striking indiscriminately, and bringing on much disorder. Movements are produced that are awkward and without grace, There is an inability to integrate within time and space. Damage to the cerebellum causes this imperfection, The signals are crossed, or they are given the wrong directions. Making a diagnosis is like searching for a needle in a haystack, With little understanding and no chances for any payback. Ataxia is not only the name of a particular neurological symptom, A sensation or change loosely classified as subjective. Ataxia is also a sign of specific diseases, that’s objective, Affecting the whole body and making prisoners its directive. This great loss and sorrow destroying much hope, Suffering in silence and demanding an improvement of scope. The chances of curing these debilitating diseases is improving, By creating awareness, the progress continues to be moving. Not pariahs anymore, simply a better understanding, A brighter future knocking on our door is more commanding. Contributions for Research, which helps us bring this success, Thank you for your generosity and wish you the best. Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 36

Page 36 Generations Sp ring 2007 Awa reness Reaches Thousands Through Concert Publicity

By Diane Williamson On July 22, 2006, the first Concert for a lengthy live interview with Claire, and gave Ataxia Awareness took place in Huntsville, AL. Dianne about 10 minutes of that time to speak Performing was nationally known two-time about ataxia and NAF. The Huntsville Times Grammy nominee singer-songwriter Claire did a long feature article about Lynch’s career Lynch with her Nashville-based band. Claire and included concert information. Through its is a long-time close friend of Alabama Partners in Charity program, NAF was given a Ambassador Dianne Williamson, who pro - full page ad in the Times , as well. Dianne did duced the concert. several television interviews and wrote articles for newspapers across north Alabama, as well as radio PSAs. Dianne Thigpen of the Greater Atlanta Support Group assisted by posting announcements with approximately 100 online radio and television community calendars, including southern Tennessee. Four online music-related newsletters promoted the con - cert, including one based in Memphis, TN, and GRITZ, out of South Carolina, which has a national readership. It was because of the band’s reputation that these entities were happy to provide publicity. Claire’s professional website performance listings included a link to our Concert for Claire Lynch and her band perform at the first Ataxia Awareness webpage, in which we Concert for Ataxia Awareness in Huntsville, AL included a link to NAF. Since the Claire Lynch Band performs all over the U.S. on a weekly The goal of the concert was not fundraising, basis, her website, www.ClaireLynch.com , has a but rather to use the publicity for the event (as national viewing audience. More national (and opposed to the event itsel f) to promote ataxia international) publicity was afforded through awareness and the National Ataxia Foundation. her monthly newsletter, which has a mailing The attendance goal was 350 ticket sales to list of 1,200-plus readers. cover the costs of the concert: venue rental, Elements of the medical community were performer fees, sound system, and publicity “targeted” through offers of discounted tickets expenses. Rather than depending on donated to incoming medical students at University of goods and services, the focus was to produce a Alabama-Birmingham’s Primary Care specialty high-quality, professional (and memorable) program in Huntsville. Dianne made appear - event through professional, fee-based contracts. ances at and sold discounted tickets at UAH’s The local public radio station was eager to air College of Nursing and a North Alabama  Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 37

Sp ring 2007 Generations Page 37 Word Find An swers Here are the answers from the puzzle on page 28. Alone

W QP IWBVDERTYUOLHGKFP By Dennis L. Troglio, St. Louis, MO B GFOCURTFVMGWNBXCZWA “Only family” my sister signed to me AJWFL IGHTSBOST I NWAKR using sign language after I asked if I PNGEACWJCAKEHROUGHFA could go to the mall with her and her F I FT I ETHANNI VERSARYS family on Saturday. Born with a genetic OL XTQU I NY JUBOWL TAGVY disease, which is not yet known, effects P BBHN I HGWI GEQEL NZCRM the function of the brain nerve cells is E I OVLEADERSH I PE BEWDP related to my disabilities. This disorder KO I C HROMOSOMEU L TRKFA became known as ataxia. The disability VZTE GLAFWBVQHZE LY IHT like many other types will give you a feel - D REL LLMARKER P NWTORZH

COML ETIONZEMDTAZICH E ing of dependence and loneliness that

K UZA VSJHU MANOBRCL KE T many people just don’t understand. G ENET BYWQBPWL I SAQRT I For me, the word “lone” becomes “alone”. SC I ENA XEGELXNYVMCZE C People with disabilities may experience GWR Z Y C X HLJDMGHALLER N the reality of life with their limitations, SYSTRANI GLBUEMVWDJO E lack of friends, love, and support. They ANCRTFEDA ZANBRCBUSZ R may often feel abandoned and all alone. BRIDGETOHOPEX MSAMLY V Maybe life for some is easier and less V L LE JBRA I NWASEECLFG O hard to cope with but those with severe A NDREWSK I ZLOYM I VERO U disabilities may have a harder time deal - PARAMS OMAR I EKPXRTBU S ing with life. Their situation is complex TYLERDC ZBWXLTHDJWTS S and not understood. ZQWTYU I A PLKJV I UNGHPY D NAPOLYMORPH I SMD HZFS My disorder gets worse. At this time, I HSCZXHBN EUROLOGYW ERT am deaf, legally blind, mild color blind, K I DNYWFENGBNHEARTXHE have mild in-coordination speech difficul - B H N I HGW I G A QMK Z GWOR ZM ties, and suffer balance loss. I attended a support meeting with other Nurse Practitioner meeting. known as, St. Louis Ataxia Support Dianne designed and printed a variety of Group, and was I impressed with the customized publicity flyers, and also modified results. He was hit by reality the moment large color photo posters provided by Claire’s we enter the room. He cried! As my record label, Rounder Records. An estimated brother saw for himself the reality of this disease, understood that he had to 300 were posted in the city and outlying accept me as I am . towns. Nearly half the people in that room were Due to the outstanding attendance and addi - in wheelchairs and the other half were tional donations, the concert’s gross proceeds family members. A lot of them couldn’t were more than $8,000 with net proceeds of even move without help. They all could more than $5,000. The reviews for the perfor - see and hear and I couldn’t. I found that mance, quality and concert organization were hard to believe. I could talk to them but very positive, leaving a very favorable impres - they could not talk to me unless someone printed in my palm or used sign lan - sion on the concert organizers and on NAF. guage. They were very friendly and kind Hopefully, this established a solid groundwork and seem to have grasped life as if their on which more successful music events can be limitations did not exist. held on behalf of NAF. O Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 38

Page 38 Generations Sp ring 2007

Mark D. Potter founder of the Center for Arizona Ataxia Support Group Disability Access was our guest speaker. Mark By Bart Beck has litigated many of the cases that have result - The Arizona Group continues to be active in providing support to ataxia families. In addition to having a nice pot-luck holiday social in December, members of the Phoenix Area Group participated in a research study at Arizona State University (ASU). The study, concerning the production of speech by indi - viduals with neurological disorders, is headed by Dr. Julie Liss of the Speech Pathology Department at ASU with support from Dr. Stephanie Spitzer and Dr. John Caviness. The Phoenix Area Group also helped put together a reception at ASU for Kyle Bryant. Kyle Bryant is riding his recumbent bicycle The Northern California Ataxia Support Group at their from San Diego to Memphis to raise awareness January meeting. of ataxia, and he rode through Phoenix on January 31st. Kyle plans to arrive in Memphis ed in the landmark decisions in the disability for NAF’s 50th Anniversary Annual access jurisprudence. Over the last 10 years Membership Meeting in late March. Mr. Potter’s law practice has exclusively repre - The Tucson Area Group looks forward to an sented persons with disabilities that have been discriminated on the basis of their disabilities. upcoming presentation by two of its members, Natalie and Hector Carrillo, on the benefits of Mr. Potter spoke about Enforcing Your using yoga to improve the flexibility, breathing, Rights to Access from a litigator’s perspective. and movement of persons with ataxia. He explained that under ADA, newly constructed buildings must be in compliance Both the Tucson and Phoenix Groups con - with the disability laws in California and also tinue with planning the NAF 2008 NAF the new prohibition in the ADA that requires Annual Membership Meeting to be held in existing facilities to be accessible so long as it is Las Vegas. readily achievable to do so. Mark educated us on knowing our rights to access business estab - Northern California Ataxia Support Group lishments and the importance to “force the By Deborah Taylor Omictin issue” to bring facilities into ADA compliance. The Northern California Ataxia Support See the CDA website http://www.cda4access. Group held our first meeting of the year on com or call 1-800-383-7027 for further details. January 13 with 40 people in attendance. We showed pictures of the two quilt  Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 39

Sp ring 2007 Generations Page 39

squares, one a picture of the Golden Gate Bridge and the other a picture of our support group from the September 2006 meeting, that we sent to Char Danielson at NAF to use in the quilt she is made for NAF 50th anniversary in Memphis. Be sure to sign-up with Jim Flagg at [email protected] to sign the confidentiality form if you want NCASG roster of members The New England Ataxia Support Group at their addresses and phone numbers mailed to your December 2006 meeting home (or let Jim know if we can save the stamp • Remaining faithful in God while dealing by e-mailing the roster to you). with ataxia To subscribe to our on-line group, please • Dealing with depression send an email to NoCalAtaxia-subscribe@ • A caregiver seminar yahoogroups.com . • A seminar on getting through the day Cooperative Ataxia Group Registry online • Disability insurance issues or by mail, for those ataxians interested in par - • How to fall ticipating in ataxia studies or clinical trials see: • Organization for parents of kids with ataxia http://www.cooperative-ataxia-group.org/ • “Ask the doctor” participate.htm . Everyone is welcome at these meetings! Contact me to borrow VHS or DVD copy of the “Together there is Understanding” video our group purchased. Kansas City Ataxia Support Group For further information on the Northern By Jim Clark California Ataxia Support Group (NCASG) On December 9, 2006 the Kansas City please contact Deborah Taylor Omictin Support Group held its annual Christmas lun - NCASG Leader (contact information can be cheon. Sixteen members and two guests found on page x of this issue of Generations ). attended the luncheon. The menu was ham, turkey and all the trimmings. The food was New England Ataxia Support Group prepared by the members and their spouses. By Donna & Rich Gorzela The theme for the day was one of fun and enjoyment, much like that of a family gather - In December, we had our group’s holiday ing. We are a family of people with ataxia who party. We had lots of fun. There were about 29 are at ease with each other and enjoy each oth - in attendance. Thank you to everyone who ers company. helped out, especially Danielle for organizing Our group is small but a dedicated group, this party. some are local and some make quite a long We typically get together two or three times a drive to attend our meeting. In the past year we year for a regular meeting at Mass. General have gained two new members. Our doors are Hospital. Our last meeting was September open to all ataxia patients, their family and 30th. At this meeting, we discussed topics for friends. our regular meetings. Members brought up We meet the second Saturday of each month such ideas as: • Practical ways to make a home accessible Continued on page 40 Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 40

Page 40 Generations Sp ring 2007

Chapter & Suppo rt Group News group are attending. We all look forward to Continued from page 39 this meeting to gather information, meet other ataxians, caregivers and doctors. from 2-4pm at the Northeast Library in Kansas We have a group meeting planned for Friday, City, Missouri. Special thanks to the Northeast April 20. We look forward to exchanging Library for providing the meeting room. information on the convention and to share our experiences. Northeast Florida Support Group By June McGrane Denver Area Ataxia Support Group The NE Florida Group met on January 20th By Tom Sathre at the Ocean Grove Clubhouse in Ponte Vedra. The Denver Area Ataxia Support Group met We were happy to see everyone after the holi - at Swedish Hospital on March 10th. We had a days and to welcome in the New Year. potluck lunch; 14 people attended with the Some discussion addressed disability insur - split about 50-50 ataxians and their caregivers. ance, the difficulty of securing these benefits and the length of time to acquire them. While we ate, we had three groups of speak - ers: the handlers of a service dog, massage ther - We had a great speaker, Mary Edwards, of PRN-Physicians Resource Network. It is a apy students, and a horse-therapy agency head. Jacksonville-based firm that supplies wheel- All three brought handouts. (A limited number chairs, scooters, walkers and many other aids to of these handouts are available on request; I’ll needy and handicapped people. Mary and her mail or e-mail if you would like copies.) The assistant demonstrated several models and she audience had several questions for the speakers. spoke of the many services that provide as The main advice that the dog’s handlers had for Rehabilitation Technicians. They provide the audience is to “use whatever dog you have portable ramps, emergency 24-hour service, proactively.” This full program is due to the repairs, oxygen, senior assistance resources and two women who are starting to take over pro - more. gram planning for our ASG. We discussed the the NAF convention in Finally, questions were taken to be forwarded March in Memphis. Several people from our to the NAF meeting. O

International 2007 Annual Ataxia Membership Awareness Day Meeting Photos International Ataxia Awareness Day will Photographs taken by Bob Paterson be held on Tuesday, September 25th. Photography at the 2007 Annual Member- This is your chance to help tell others ship Meeting in Memphis can be viewed about ataxia. and ordered online. To view the photos or IAAD kits are available on our website, order prints, visit www.yahoo.com/photos www.ataxia.org , or by contacting NAF at and use the following: (763) 55 3-0020. ID: bpaterson161 Please help spread the word! Password: bp1224 Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 41

Sp ring 2007 Generations Page 41 NAF Chapte rs & Support Gr oups

This is a list of NAF chapters and support groups. The use of these names, addresses and phone numbers for any purpose other than requesting information regarding NAF or joining a chapter or support group is strictly prohibited. We encourage you to contact the chapter or group nearest you. Chapters California June McGrane Los Angeles Ataxia S.G. 54 Troon Terrace Ponte Vedra, FL 32082-3321 Chesapeake Chapter Sid Luther, President 339 W. Palmer, Apt. A (904) 273-4644 Ca rl J. Lauter, President Glendale, CA 91204 E-mail: jmcgranepvb@ 3200 Barker Circle, I-117 bellsouth.net Adamstown, MD 217 10-9660 (818) 246-5758 (301) 64 4-1836 E-mail: [email protected] Orlando Ataxia S.G. E-mail: [email protected] Web: www.geocities.com/ Jim Henderson Web: www.geocities.com/ HotSprings/Falls/6629/ 3212 Lee Shore Loop HotSprings/Oasis/4988/ Jim Fritz Orlando, FL 32820 (310) 397-5208 (407) 568-9092 Louisiana Chapter E-mail: [email protected] E-mail: jamesone24 @aol.com Ca rla Hagler, President Tampa Bay S.G. PMB 51056 Northern California S.G. Nygel Lenz Deborah Omictin 2250 Gause Blvd. 3042 Eastland Blvd., H 102 26840 Edridge Ave. Slidell, LA 70461 Clearwater, FL 33761 Hayward, CA 94544 (985) 643-0783 (727)791-3587 (510) 783-3190 E-mail: [email protected] E-mail: [email protected] E-mail: [email protected] Web: http ://www.angelfire.com/ Web: www.flataxia.org la/ataxiachapter Web: www.geocities.com/ casupport/ Crystal (Chris) Frohna Mississippi Chapter 9753 Elm Way Camille Daglio, President Orange County S.G. Tampa, FL 33635 P.O. Box 17005 Margaret Ann Hyatt (813) 453-1084 Hattiesburg, MS 39404 15202 Clemente St. E-mail: [email protected] E-mail: [email protected] Westminster, CA 92683 (425) 823-6239 Georgia Support Groups E-mail: [email protected] Greater Atlanta Area S.G. Web: www.geocities.com/ocasgg/ Greg Rooks San Diego S.G. 320 Peters St., Unit 12 Alabama Earl McLaughlin Atlanta, GA 30313 Birmingham, AL S.G. 2087 Granite Hills Dr. (404) 822-7451 Becky Donnelly El Cajon, CA 92019 E-mail: rooks gj@ yahoo.com 16 The Oaks Circle (619) 447-3753 Dave Zilles Hoover, AL 35244 Ea rl ’s e-mail: [email protected] 2400 Kimbrough Ct. (205) 987-2883 SG e-mail: sdas [email protected] Atlanta, GA 30350 E-mail: [email protected] Web: www.geocities.com/ (770) 399-6710 ataxia_sdasg Arizona E-mail: [email protected] Colorado Lynn Robinette Phoenix Area S.G. 1971 Sumter Court Rita Garcia Denver Area Ataxia S.G. 2322 W. Sagebrush Dr. Lawrenceville, GA 3004 Donna & Tom Sathre (770) 982-0275 Chandler, AZ 85224-2155 5902 W. Maplewood Dr. (480) 726-3579 E-mail: lynn.robinette@ Littleton, CO 80123 comcast.net E-mail: [email protected] (303) 794-6351 Tucson Area S.G. E-mail: [email protected] Illinois Bart Beck Chicago Area Ataxia S.G. 7665 E Placita Luna Preciosa Florida Craig Lisack Tucson, AZ 85710 Northeast Florida S.G. 3400 Wellington Ct., Unit 302 (520) 885-8326 Barry McGrane Rolling Meadows, IL 60008 E-mail: bbeck [email protected] 9 Arbor Club Drive, Apt. 2 1-107 Web: www.geocities.com/ Ponte Vedra Beach, FL 32082 Continued on page 42 azataxiasg (904) 543-1638 Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 42

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Chapters and Suppo rt Groups Web: www.geocities.com/ Pennsylvania Continued from page 41 twincitiesataxia SE Pennsylvania S.G. Mississippi Liz Nussear Illinois (cont.) (610) 277-7722 See Mississippi Chapter E-mail: [email protected] (847) 797-9398 E-mail: [email protected] Missouri South/North Carolina Richard Carr Kansas City S.G. Carolinas S.G. 120 South Elm Jim Clark Cece Russell Mount Prospect, IL 60056 6605 N. Holmes 1305 Cely Rd. (847) 253-2920 Gladstone, MO 64118 Easley, SC 29642 E-mail: [email protected] (816) 468-7260 (864) 220-3395 E-mail: clarkstone9348@ E-mail: cecerussell@ Southern Illinois S.G. sbcglobal.net Elaine Darte hotmail.com 36 Lindorf Dr. St. Louis S.G. Texas Belleville, IL 62223 Mark Bellamy (618) 397-3259 1306 Cypress Golden Triangle Area S.G. Pacific, MO 63069 Dana Leblanc Kansas (636) 271-6432 2801 W. Sunset #59H E-mail: mark-bellamy@ Kansas City S.G. Orange, TX 77630 Lois Goodman sbcglobal.net (409) 883-5570 729 S. Clark St. Web: www.stlataxia.org E-mail: [email protected] Fort Scot, KS 66701 Jim Johnson Web: http://ladyd1973.tripod (620) 223-1996 E-mail: [email protected] .com/index.html Houston Area S.G. Louisiana New York Angela Cloud See Louisiana Chapter Central New York Ataxia S.G. 9405 Hwy 6 South Linda Johnson Houston, TX 77083 Maine 2849 Bingley Rd. (281) 693-1826 Maine Support Group Cazenovia, NY 13035 E-mail: [email protected] June West E-mail: johnsons@ summitsolutions.net North Texas S.G. 56 Ten Penny St. David Henry Jr. Freeport, ME 04032 North Carolina 7 Wentworth Ct. (207) 865-4969 Trophy Club, TX 76262 See Sout h/ North Carolina E-mail: [email protected] E-mail: cheve 11e@ Web: www.ataxiaME.com Ohio sbcglobal.net Maryland Central Ohio S.G. Utah Cecelia Urbanski Howard County S.G. Dr. Julia Kleinschmidt Kathy van’t Hoff 7852 Country Court Mentor, OH 44060 Moran Eye Center, U of Utah (301) 854-2650 50 N. Medical Dr. E-mail: [email protected] (440) 255-8284 E-mail: [email protected] Salt Lake City, UT 84132 Tim Daly (801) 585-2213 (410) 715-1241 Peggy Schroeder E-Mail: julia.kleinschmidt@ Web: www.geocities.com /hcasg/ 59766 Mount Olive Rd. hsc.utah.edu McArthur, OH 45651 Massachusetts (740) 596-4822 Virginia [email protected] New England S.G. See Chesapeake Chapter Donna & Richard Gorzela 45 Juliette St. Oregon Washington Andover, MA 01810 Willamette Valley Ataxia S.G. (978) 475-8072 Malinda Moore, CCC-SLP Milly Lewendon Albany General Hospital 14104 107th Ave. NE Minnesota 1046 Sixth Ave. S.W. Kirkland, WA 98037 Twin Cities Area S.G. Albany, OR 97321 (425) 823-6239 Lenore Healey Schultz (541) 812-4162 Milly's e-mail: mmlewendon@ 2549 32nd Ave. S. (541) 812-4614 FAX comcast.net Minneapolis, MN 55406 E-mail: malindam@ S.G. e-mail: ataxiaseattle@ (612) 724-3784 samhealth.org comcast.net  E-mail: [email protected] Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 43

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Washington (cont.) Ambassa dor Listi ng Spokane Area Linda Jacoy PO Box 19045 The following is a list of NAF Ambassadors. Ambassadors are Spokane, WA 99217 often in areas not served by a support group or chapter. Please [email protected] get to know your Ambassadors, and if you would like to become Electronic an Ambassador please contact the NAF office for an application. Support Groups Alabama Indiana Dianne Blain Williamson Jenney Roemke 123 Leigh Ann Rd. 4522 Shenandoah Circle W. E-NAF (Electronic NAF) S.G. Hazel Green, AL 35750 Ft. Wayne, IN 46835 Jim Kardos (256) 828-4858 (219) 485-0965 1283 Westfield SW E-mail: [email protected] North Canton, OH 44720 Millard H. McWhorter III Kentucky (330) 499-4060 P.O. Box 1457 Janice Johnson E-mail: jkardos @juno.com Andalusia, AL 36420 8555 Brownsville Rd. (334) 222-3423 Brownsville, KY 42210 International E-mail: [email protected] (270) 597-3854 Support Groups Arkansas Albin Douglas Johnson Judy and David King 10602 Tarrytowne Dr. Canada 12580 Rivercrest Dr. Louisville, KY 40272 Little Rock, AR 72212 (502) 995-9003 Alberta E-mail: [email protected] E-mail: djohnson853@ Calgary hotmail.com Andi Birks California Maryland 125 Tuscarora Way NW Barbara Bynum Calgary, Alberta 3801 W. Bailey John and Karen Rosenberger Canada T3L 2G9 Merced, CA 95340 6411 Spring Forest Rd (403) 451-9079 (209) 383-1275 Frederick, MD 21701 (301) 682-5386 E-mail: bren-l-j @hotmail.com Mike Fernandes E-mail: kdrosenberger@ 7251 Brentwood Blvd. # 114 adelphia.net British Columbia Brentwood, CA 94513 Ataxia Society Vancouver (925) 516-6906 Michigan Brenda Dixon E-mail: [email protected] 206-8611 Ackroyd Rd Lynn K. Ball Darrell Owens Richmond, B.C. 35015 Riverview Dr. 917 Paseo Camarillo #717 Canada V6X 3P4 Paw Paw, MI 49079 Camarillo, CA 93010 (604) 273-2789 (269) 657-5191 (805) 482-1736 E-mail: [email protected] E-mail: [email protected] E-mail: [email protected] E-mail: [email protected] O Clare and Patricia Greene Web: www.bcataxia.org Connecticut 4374 Round Lake Rd. Terre Di Placito Laingsburg, MI 48848 107 Barton St. (517) 651-6233 Torrington, CT 06790 Hel p! (860) 489-5092 Minnesota Lori Goetzman Please remember to Florida send us your Chapter and 5179 Meadow Dr. Christina Sugars Rochester, MN 55904 Support Group News arti - 302 Beach Dr. (507) 282-7127 cles for each and every Destin, FL 30541 E-mail: [email protected] issue of Generations ! (850) 654-2817 E-mail: [email protected] Debbie Kelly The deadline to get 310 Fern St. #7 your news into the sum - Illinois Big Lake, MN 55309 mer issue of Generations Kevin Donnelli (763) 263-1812 is May 1 8th. 6525 Thomas Parkway Rockford, IL 61114 (815) 633-8620 Continued on page 44 Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 44

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Ambassadors Internation al Ohio Continued from page 43 Ambassadors James Kardos 1283 Westfield S.W. North Canton, OH 44720 American Samoa Minnesota (cont.) (330) 499-4060 E-mail: [email protected] Bob Coulter Julie Schuur P.O. Box 9062 218 Cashin Dr. Joe Miller American Samoa 96799 Luverne, MN 56156 Box 148 (684) 688-2437 (507) 283-2555 Mesopotamia, OH 44439 E-mail: [email protected] (440) 693-4454 Australia E-mail: kakah @ Missouri jmzcomputer.com Renee Moore (Nee McCallum) 44 Lotherton Way Roger Cooley Oklahoma Hocking, W. Australia 6065 1609 Cocoa Court 61 -8- 9404-7052 Columbia, MO 65202 Mark Dvorak E-mail: moorear @ (573) 474-7232 before noon 915 Thistlewood westnet.com.au E-mail: [email protected] Norman, OK 73072 (405) 447-6085 Canada New York E-mail: [email protected] Valerie Ruggiero and Susan M. Duncan Diana Kimmel Texas #407-1330 Richmond Rd. 5 Anna Court Ottawa, Ontario K2B 8J6 Jose Julio Vela (613) 820-799 Stony Point, NY 10980 6702 Long Meadow (845) 786-7471 E-mail: smdunca n1@ Corpus Christi, TX 78405 sympatico.ca Valeria E-mail: v rabsolutely@ (361) 993-9006 aol.com Barbara Pluta Cathy Chamberlain Diana E-mail: dlk0602@ 551 Vermilyea Rd. optonline.net 356 Las Brisas Blvd. Seguin, TX 78155-0193 Belleville, Ontario Diane P. Hall (830) 557-6050 Canada K8N 4Z5 210 E. Utica St. E-mail: [email protected] (613) 962-9623 Buffalo, NY 14208 Prentis Clairmont (716) 881-0677 Virginia E-mail: dianecrewshall@ 299 Somerset West, Apt. 402 hotmail.com Dick Sargent Ottawa, Ontario K2P 2L3 (703) 321-9143 (613) 864-8545 E-mail: dcksrgn t9 @aol.com E-mail: prentis.clairmon t@ qmail.com Terry Greenwood 37 Ericsson Bay Workplace Giving Winnipeg, Manitoba R3K 0T8 (204) 885-3955 If you are a federal generously in support of the E-mail: tgreenwood 6@ shaw.ca employee who gives through Foundation. the Combined Federal We encourage all govern - India Campaign (CFC), please ment employees to con - Abhinav Kedia consider giving to the tribute to NAF through CFC, A9/7A Gomti Apartments Kalkaji Extension National Ataxia Foundation. and ask that you also let New Delhi-19 Over the years, CFC sup - your co-workers know about Phone: 0091-011-29960809/ port has helped support the important work of the 29962759/41861809 promising ataxia research Foundation and their oppor - Mobile: 0091-098-18411506 and has provided vital tunity to support our efforts E-mail: abhinav_kedia_2000 @yahoo.com programs for victims of atax - through CFC giving. ia and their families. We The National Ataxia Chandu Prasad George-CH H-No 5-95/20 SRI Laxmi Nagar gratefully acknowledge Foundation’s CFC number is Colony, Old Alwal, those government employ - 1028. Secunderabad 500010 ees who have given so Phone: 0-402-797-1043 E-mail: sam_ataxiaindia@ O yahoo.com Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 45

Sp ring 2007 Generations Page 45 Ca lendar of Events

APRIL Meeting from 2 to 4 p.m. at NE Library, 65 Saturday, April 28 Wilson Ave., Kansas City. Contact Lois Goodman at (620) 223-1996 or Jim Clark at Alabama Ataxia Support Group Meeting [email protected] . and Luncheon at Covenant Presbyterian Los Angeles Ataxia Support Group Church, Birmingham. Contact Becky Donnelly Meeting from 2 to 4 p.m. at The Westside at (205) 987-2883 or donnelly6132B@ aol.com . Center for Independent Living, 12901 Venice New England Ataxia Support Group Beach. Contact Sid Luther for more informa - Meeting from noon to 3 p.m at the Yawkey tion at (818) 246-5758. Web: www.geocities.com/ Building on the second floor in Room 210 at HotSprings/Falls/6629/ . Mass General Hospital. Contact Donna and North Texas Ataxia Support Group Rich Gorzela at (978) 475-8072. Meeting at 10 a.m. at Las Colinas Medical MAY Center, 6800 MacArthur Blvd, Irving. Saturday, May 5 Orlando Ataxia S.G. Meeting from noon to 3 p.m. at Dr. Phillips Library, 7255 Della Dr., Ataxia Society of Vancouver, B.C. Support Orlando. Contact Jim Henderson at (407) 568- Group Meeting from 1 to 3 p.m. at the G.F. 9092 or [email protected] . Strong Rehab Centre, Room 109. Contact SE Pennsylvania Ataxia Support Group Brenda Dixon at (604) 273-2789 or bdixon57@ Meeting from 10 to 11:30 a.m. at Mercy telus.net . Web: http://bcataxia.org/events.htm . Suburban Hospital, DeKalb Pike, Norristown Monday, May 7 in the second floor Gerber Room. Contact Liz Nussear at (610) 277-7722 or [email protected] . Spokane Area Support Group Meeting Tampa Bay Ataxia Support Group from 5:30 to 7 p.m. at Sacred Heart Hospital, Meeting from noon to 3 p.m. at Feather Spokane, in the Mary Bead Room. Contact Sound Community Church, 13880 Feather Linda Jacoy at [email protected] . Sound Drive, Clearwater. Contact Charlie Wednesday, May 9 Kirchner at [email protected] . Web: www.flataxia1.org . Utah Ataxia Support Group Meeting and tour of new Moran Eye Clinic Building. Saturday, May 19 Contact Dr. Julia Kleinschmidt at (801) 585- Orange County Ataxia Support Group 2213 or [email protected] . Meeting from 2 to 5 p.m. at Orange Coast Willamette Valley Ataxia Support Group Memorial Medical Center, 9920 Talbert Ave., Meeting from 11 a.m. to 12:30 p.m. at Albany Fountain Valley. Contact Peggy Hyatt at General Hospital, Albany. Contact Malinda [email protected] . Web: www.geocities.com/ Moore, CCC-SLP at (541) 812-4162 or ocasgg/ . [email protected] . Tucson Area Support Group Meeting . Saturday, May 12 Contact Bart Beck at (520) 885-8326 or [email protected] . Greater Atlanta Area Ataxia Support Group Meeting at Emory Center for Sunday, May 20 Rehabilitation Medicine. Contact Greg Rooks Chicago Area Ataxia Support Group at (404) 822-7451. Web: www.geocities.com/ Meeting at Good Samaritian Hospital, White atlantaataxia . Kansas City Ataxia Support Group Continued on page 47 Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 46

Page 46 Generations Sp ring 2007 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 November 2006 through February 2007. 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. Dorothy Aho Peter Castaneda Margaret Finchum Lisa Jaffe M/M McDonough Jeffrey Ahrens Ms. Charlton Charles Fisher Shirley Janulewicz Charley McLaughlin Alexander Family Stephanie Chartrand Fred Flory Kerry Johnson Earl McLaughlin M/M Alibrid Mrs Chung Kathleen Foster Terry Johnson Kenneth Medown Crystal Allsopp Krista Clarke Lisa Fountain Bianca Jones James Melchionna Catherine Anderson Iris Cline Mary Jo Frei R. Jurasek Christopher Meyer Ms. Arnauld Annette Colgate Mark Frykman Andrew Kail Melissa Meyer M/M Bagwell R.J. Compiano John Gannon Keiko Kain Harvey Millburg Virginia Baldwin Edith Cooley Ramona Gasper Robert Keithly Anna Misplay Vicki Balogh Les Cooley Bill Gill Gerard Kelleher Dorothy Mochalski Nancy Barbeau Darlene Cornwell- Kathy Gill Amy Keller Herb Moen Mary Barros Davis William Godfrey Carole Keniley Minnie Molini Maureen Bartlett Betty Costello Penny Golminas M/M Kern Elizabeth Morris Michelle Baumgart Joan Costello John Goshert Joseph Khan Carol Mullen Dr. Luke Baxley Allan Crawford Grace Family Salim Khan Carol Murphy Dr. Wm. Baxley Karen Crawford Brenda Graner Young Kim Charles Murphy Barton Beck Robert Currie Lawrence Graner Bob King William Murphy Betty Beck Archie Curtit Cyndi Gray Jamie Kosie Irene Naide Clair Beck Marty Dail Jacqueline Gray Jamie Kosieracki Bruce Nanninga Erica Berg Kathy Davenport Paschal Guercio Brant Kreun Harvey Nevis David Bertch Kennon Davis Shikha Guha Marlene Kusumoto Jolanta Nizelowski M/M Birdson Page Davis Anne Gulliver-Reed Norman La Barre John Norton Kim Bishop Tom Davis Margaret Hamrick Betty-Jo Labbate Patricia O’Brien M/M Black Walter Davis Evelyn Hankins M/M Laird M/M O’Connell Jackie Blackburn Pamela Dawn Jimmy Hankins Leonilla Lake Kathie O’Day Philip Blackmore Samantha Dembski Mary Hansell Rodger Larsen Joyce O’Leary Ted Blatter Deniger Family Donald Hareid Gerald Laukhuf Bruce Olson Family Frank Borio Matthew DiIorio Carolyn Harris Lorrie Laukhuf Leland Osborn Mike Bosckay Terre Di Placito Burton Harwick Linda Lee Laura Owens Matthew Bouma Fred Donnelly Emily Heinz Johna Leidholt Richard Palmer Kim Bourg Joe Drake Lois Henrich Nicole Lester-Ekis Alfred Pandolfi Linda Bowen Sandy Dudzic David Henry Sylvia Lindsey Peg Parente Carol Brand Margaret Duggan Nancy Higgins Catherine Liverman Bonnie Park Hilda Braswell Chris Dunsing Yvette Hill Jacqueline Lombard Maura Pederson Muriel Breland Maureen Dunsing Denise Hiller Jim Longo Mark Peterson John Brennan Louis Eberly Richard Hirasuna Jeff Ludwig Patricia Pisano Jane Brewer Andy Egeressy Susan Hirasuna Scott Lund Kim Poor Nancy Brophy-Brooks Phillip Eisenhaur Eugene Hoffman Homer Mace Sally Poor Esther Brown Robert Emerson Johnny Hogan M/M Macedonia Emily Potts Kyle Bryant Bill Everdale Bryce Holcomb Donna Magee Rita Powell Amber Buck Mitch Everdale Francine Hood Carly Magnuson Dr. K. Raghava Jennifer Cable Patricia Fagg M/M Horn Adam Main Prasad Brenda Callis Emily Fain Jim Horne-Hankins Sarah Main-King David Price Edward Callis Susan Farmer Lois Hough David Marcy Jeannie Price Jimmy Campbell E.L. Fauver Sammy Hubbard Deborah Markham Denise Price-Dudley Benjamin Cantor J.K. Fauver James Hughes John Marten Myrtle Puckett Virginia Cardinal Betty Fears-Jones Marilyn Humphrey Darrin McCarty Julie Quinlivan Christopher Casey Shirley Fields Howard Hunnius Simone McCauley Scott Quinn Sue Casey M/M Fincher Dorothy Jaber Francis McConville V. Ramachandran  Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 47

Sp ring 2007 Generations Page 47

Calendar of Events (303) 794-6351 or [email protected] . Continued from page 45 Kansas City Ataxia Support Group Meeting from 2 to 4 p.m. at NE Library, 65 Oak Room, 3815 Highland Ave., Downers Wilson Ave., Kansas City. Contact Lois Grove. Contact Craig Lisack at (847) 797-9398 Goodman at (620) 223-1996 or Jim Clark at or [email protected] . [email protected] . Seattle Area Ataxia Support Group North Texas Ataxia Support Group Meeting at the Federal Way 320th Library, Meeting at 10 a.m. at Las Colinas Medical 848 S. 320th St, Federal Way. Contact Milly Center, 6800 MacArthur Blvd., Irving. Lewendon at (425) 830-7299 or mmlewendon@ SE Pennsylvania Ataxia Support Group comcast.net . Spring Luncheon . Location TBD. Contact JUNE Liz Nussear at (610) 277-7722 or lizout@ aol.com . Monday, June 4 Spokane Area Support Group Meeting from Wednesday, June 13 5:30 to 7 p.m. at Sacred Heart Hospital, Willamette Valley Ataxia Support Group Spokane in the Mary Bead Room. Contact Meeting from 11 a.m. to 12:30 p.m. at Albany Linda Jacoy at [email protected] . General Hospital, Albany. Contact Malinda Moore, CCC-SLP at (541) 812-4162 or Saturday, June 9 [email protected] . Ataxia Society of Vancouver, B.C. Support Group Meeting from 1 to 3 p.m. at Saturday, June 16 G.F. Strong Rehab Centre, Room 109. Orange County Ataxia Support Group Contact Brenda Dixon at (604) 273-2789 or Meeting from 2 to 5 p.m. at Orange Coast [email protected] . Web: http://bcataxia.org/ Memorial Medical Center, 9920 Talbert Ave., events.htm . Fountain Valley. Contact Peggy Hyatt at Denver Area Ataxia Support Group [email protected] . Web: www.geocities.com/ Meeting from 1 to 3:00 p.m. at The Swedish ocasgg/ . Hospital Medical Conference Center in the Phoenix Area Support Group Meeting . A/B Meeting Rooms, 501 East Hampden Ave., Contact Rita Garcia at (480) 726-3579 or Englewood. Contact Donna and Tom Sathre at [email protected] . O

Donna Reiser Dolly Sachs Windy Smith Ernie Talarico Laura Volker Jack Reynolds Dominick Santa- Leon Spears Tiffanay Talarico- Carolyn Watkins Rhodes Family Croce Abbie Spellman Compiano Guy Watkins Tina Rhodes Santa-Croce Family Jenny Spiller Dr. Tommy Tatum Rachae Wauben Janet Riley Marcella Schifrin Douglas Spooner Rebecca Taylor Ben Waxman Florence Rinaldi Mary Schmidt Joey Staiger Robert Taylor Betty Webb Nathan Robinson Bruno Schraermeyer Joseph Stamler Roger Teske Emily Weibel Donald Roemke Leticia Schraermeyer Ronald Stammich Nickie Thomas Grace Whalen Kenneth Roemke Derek Semler Charles Stebbins Jesse Tucker Michael Wheeler Walter Roemke Virginia Shafer Lori Stein Vincent Tumminelli Charles Williams Eileen Roscoe Hunter Shankle Cathy Steward Thomas Turnbull Marcelle Wilson Richard Rose Sherry Sharp John Surabian Virginia Turner Donald Woods Sally Ross Erlene Shear John Surabian W.A. Turner Pearl Workley- Runyen-Shannon Robert Sherman Daniel Svabek John Underwood Straub Family Mrs. D.A Slingerlan Kyle Swier Bob Vande-Brake William Wynne Leonard Rus Kim Slotterback George Swimm Rudy Van’t Hoff John Yobs Medena Ryan Doyle Smith Ronald Swope Mary VanVleet- Thomas Yobs Tim Ryan Robin Smith Lucille Tabor Stein Pete Zarmakoupis O Gen_0701:Gen_0701.qxd 07 04 17 4:28 PM Page 48

National Ataxia Foundation Non-Profit 2600 Fernbrook Lane, Suite 119 Organization Minneapolis, MN 5544 7-4752 U.S. Postage (76 3) 55 3-0020 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 (76 3) 55 3-0020. Thank yo u!

GIFT – HONOR – MEMORIAL MEMBERSHIP

A contribution given in memory of a friend or Yes, I want to help fight ataxia! Enclosed is relative is a thoughtful and lasting tribute, as my membership donation, which enables NAF are gifts to honor your friends or family. A Gift to continue to provide meaningful programs and Membership is a wonderful gift to a friend or services for ataxia families. (Gifts in US Dollars) K relative for a special occasions like birthdays, Lifetime membership $500 + graduations, anniversaries, and holidays. NAF Annual memberships: will acknowledge your gift without reference to K Patron membership $10 0-$499 the amount. K Professional membership $45 + K Simply fill out this form and mail with your Individual $25 + K check or credit card information to the National Household $45 + K Ataxia Foundation. Addresses outside the U.S. please add $15 Hono r/ Memorial envelopes are available free Your Name ______of charge by writing or calling NAF. Address ______My contribution is: K K K City /State /Zip ______In Memory In Honor Gift Membership E-Mail ______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 Name ______National Ataxia Foundation. Address ______Total Amount Enclosed $ ______K K City/State/Zip ______Credit Card: Visa Master Card Name on Card ______From: Card # ______Name ______Exp. Date ______Address ______Signature ______City/State/Zip ______Phone Number ______