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AFTD News Spring 2011

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Volume VIII, Issue 1 Spring 2011 AFTD Adopts New Name, Renews Mission esponding to feedback from pa- varied constituent groups that AFTD the word “dementia” when diagnos- tients, families, and many medi- serves: patients, caregivers, researchers ing a person with an FTD language or R cal experts, AFTD has changed and clinicians. Work led by an ad hoc movement disorder. In the literature, its name to e Association for Fron- committee of AFTD’s Board of Di- researchers use a variety of terms to re- totemporal Degeneration. e change rectors also included an extensive lit- fer to the broad group of diseases: some was adopted in recognition of a recent erature search and engaged discussions use “frontotemporal dementias” some shift in medical terminology, as well as use FTLD, or frontotemporal lobar a strong desire that AFTD be a place With a new name, degeneration (which is a broad term where patients and caregivers living comes a new web address. for the underlying disease pathology) with the wide variety of diagnoses the and at least one journal has already organization supports will feel welcome. Visit us at used “frontotemporal degeneration.” “e AFTD Board of Directors unani- www.theaftd.org. “All of our experts agree that this mously supported this decision,” says array of clinical disorders include dif- AFTD Board Chair Beth Walter. “We with the organization’s Medical Advi- ferent types of abnormal protein ag- have so much important work to do, sory Council and peer organizations. gregation in the frontal and/or temporal we invite everyone affected by any of While results were not unanimous, lobes of the brain,” says Emily Levy, these diseases to join us to spread aware- some facts did emerge. A significant ad hoc committee chair. “So it became ness, create support services and fund portion of families do not identify clear that we needed a comprehen- the research that will produce a cure.” with the term “dementia” and some sive term that includes all of the clini- The decision came after a lengthy are offended by it. Many of the clini- cal subtypes and all of the pathologies.” process that included surveying the cians indicated that they do not use (See New Name, page 4) Inside is Issue Current Advances in FTD Research Spotlight On A Medical Advisory Council Update from Bradley Boeve, M.D. Emily Levy........................2 nterest and activity in FTD continues to build, and News Briefs........................2 brings with it the hope that within the coming decade Biomarker Grants...............3 I we will witness the first disease-modifying therapies. Annual Meeting.................3 e following summary is a brief update on several Potamkin Prize...................5 current advances within the FTD research community: Donations........................6-7 Strategic Research Analysis AFTD and the Alzheimer’s Drug Discovery Foundation Matching Gifts ....................6 (ADDF) commissioned a comprehensive review of Danis Challenge................... 7 funding from 1998 – 2008 for FTD-related issues. Online Survey.....................8 e intent of the analysis is to review research funding internationally, explore the pattern of research spending, On Coping ...........................9 and to determine where gaps and opportunities Bradley Boeve, M.D. Awareness........................10 exist. A summary of the report will be published this Chair, AFTD Medical Tell 10 People Events........11 (See Research Advances, page 4) Advisory Council 2 e Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 Spotlight On...Emily Levy, AFTD Board of Directors hen Emily Levy But when Team Legal questions? She found a lawyer. W finds herself at Alice set out to As the support group continued, Levy a dead end her solution learn more about developed a relationship with AFTD. In is simple: build a new FTD support in 2010, she joined the Board, and Research road. As a consultant Boston, they didn’t and Awareness Committees. “I thought, in the biomedical field, just hit a dead end: wow, I’ve just found what I didn’t even Levy is used to finding “It just felt like we know I was looking for,” Levy says. a new way. But when were dropped into a What she was looking for, it turns out, Levy’s friend, Alice, was black hole,” she says. was a chance to lend her skills to the diagnosed with FTD in “ere was nothing.” broader cause. “It really has been an 2007, she had no idea how many new But true to her nature, Levy was amazing journey to be part of the growth roads she’d end up building as a result. determined to find her way out of of the organization, and then be able to Alice had no close family available to the black hole and into the light. have an impact on what happens next.” help care for her through the disease. “We started a support group As for the road ahead, Levy is ready And so when Alane Airosus, a friend of thinking that when people came they for the challenge. “We just have to keep Alice’s from childhood asked for help, would know what to do. Of course going. We just have to find the people Levy and some of her other Boston- we were wrong! ey were as lost as who bring the drive, the money, the based friends set up a support system we were!” is just motivated Levy connections, and the will to get it done.” they called “Team Alice” to manage all to work harder to find help for Team Because, to Levy, the road may be long, aspects of her care. Levy took on the Alice, and the group of caregivers she and there may be some roadblocks, role of healthcare proxy, and later, foster had brought together. She asked the but the only place to stop is a cure. mom to Alice’s Labrador retriever (a group what they needed. If there were Contributor Nicole Savini is a member of role Levy’s cat is less than pleased with). medical questions, she’d find a doctor. AFTD’s Awareness Committee AFTD News Briefs Participants are needed for a study to ree new caregiver support groups evaluate the safety and efficacy of the began meeting in January and February, drug davunetide for the treatment of bringing the total number of groups in the progressive supranuclear palsy. For additional U.S. to 52. A new FTD and Lewy body information, go to www.clinicaltrials.gov, caregiver support group in the southwest click Search for Clinical Trials and enter “PSP region met for the first time in January davunetide.” in San Diego, Calif. e group continues to meet from 2 to 3:30 p.m. on the first Grants through the Comstock Wednesday of each month. For details and to Mario Mendez, M.D., Ph.D. Caregiver Respite Program help full- pre-register, call Lisa Snyder at 858-622-5800. time, unpaid caregivers arrange short-term By live webcast, 130 people daytime or overnight care for loved ones e south Atlantic region’s newest participated March 2 in Grand diagnosed with FTD. For more information caregiver support group met for the first Rounds on “e Spectrum of or to apply for a grant, go to Support & time in January in Cary, North Carolina. Frontotemporal Degeneration” Resources on our website, click Finding e group continues to meet at 7 p.m. at the University of North Texas Support and Day Programs & Respite. on the third Tuesday of each month. For Health Science Center (UNTHSC), location and details, contact Tayloire Queen representing the largest partcipation Clinical Tools, Inc. is looking for at [email protected] or 919-796-5752. UNTHSC has had to date. e caregivers to participate in a research study program, presented by Mario to help develop a website for Alzheimer’s In New England, a new caregiver Mendez, M.D., Ph.D., of the AFTD disease and dementia caregivers. e Chapel support group met for the first time Medical Advisory Council, was Hill, North Carolina, company recently in February in Salem, New Hampshire. designed for general practitioners and received funding from the National Institute e group continues to meet every other other clinicians interested in learning on Aging to develop the educational and Monday from 6 to 8 p.m. For details, email more about the diagnosis and care of support website. For more information or to Val Pierce at foxfi[email protected] patients with FTD. It is available at participate in the study, go to Newsroom and (please include “FTD Support Group” in cme.edocendo.com. click on Newsfeed on our website. the subject line) or call 603-401-5544. e Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 3 Grants Awarded for FTD Biomarkers e Association for Frontotemporal Degeneration Allen Roses, M.D., at the Duke Center for Drug Discovery, (AFTD) and the Alzheimer’s Drug Discovery Foundation Durham, North Carolina, $125,000 for Fine-mapping and (ADDF) recently awarded four grants to develop characterization of genetic biomarkers that facilitate the acceleration biomarkers for FTD. anks to a generous partnership of drug discovery for frontotemporal dementias; with ADDF, which matches funds raised by AFTD Marcel M. Verbeek, Ph.D., M.Sc., at the Radboud University 2:1, as well as a challenge grant from Lee Danis of Nijmegen Medical Centre, Nijmegen, e Netherlands, Dallas (see story on page 7), $460,000 was awarded. $100,000 for TDP-43 and tau as cerebrospinal fluid biomarkers “We were tremendously pleased with the applications to discriminate frontotemporal dementia subtypes; and we received; very high-quality projects were submitted by Victor Villemagne, M.D., at the University of Melbourne, excellent scientists from a wide range of scientific specialities Melbourne, Australia, $135,000 for [18F]-THK523, a novel in and institutions,” says AFTD Board Member Philip Lovett.
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