AFTD Kids and Teens Our Children Are Not Alone by Amy Eissler Explore

Volume XI, Issue 1 Spring 2014 AFTD Kids and Teens Our Children Are Not Alone by Amy Eissler Explore. Learn. Connect. Two parallel sites These three powerful words are In order to provide age-appropriate used to describe the mission of a new information that is relevant to a resource designed to meet the unique range of young visitors, the website needs of children and teenagers is split into two separate sites--a who have a parent or loved one with site designed for kids (roughly ages frontotemporal degeneration (FTD). 4-11 or 12) and a site designed for In an effort to provide these youths teenagers (roughly 13 and up). While with the information, community and the site is designed to be explored support they need, The Association of independently by children, not all Frontotemporal Degeneration (AFTD) children will be interested in or ready is excited to announce the launch for all the information at once. of a new website “AFTD Kids and A Letter to Parents, available Teens” (www.aftdkidsandteens.org). through the home page, encourages parents to preview www.aftdkidsandteens.org “FTD is a progressive disease the site to decide how best to with many variants, creating lots Through the site they can develop introduce it to their child. of changes at home for families some comfort with the situation, and loved ones. AFTD Kids and recognize they are not alone and find The basic structure of both sites is Teens offers kids a chance to explore empowerment to cope, ” said Sharon similar. Each includes five sections and learn on their own terms. Denny, AFTD program director. (Continued on page 8) Inside This Issue AFTD Receives $1 Million Gift Spotlight On he Association for Frontotemporal AFTD’s goals for the next five years.” John Whitmarsh..............2 Degeneration (AFTD) is pleased In accordance with the donor’s wishes, News Briefs........................2 to announce receipt of a $1 million AFTD will work with experts on our donation to support research. The gift, Education Conference........3 Medical Advisory Council to explore ways which comes from an anonymous donor to leverage this contribution, using it to Participate in Research.......4 who is a long-time supporter of AFTD, create initiatives that attract and engage will accelerate the association’s strategic Drug Discovery Awards.......5 new funding partners and researchers for investment in science that will lead to the cause. In so doing, AFTD will build Donations.......................6-7 the first effective therapies for FTD. upon a tradition of leadership in research AFTD Kids & Teens.............8 “We are tremendously grateful for funding which includes seed funding for this vote of confidence,” noted Jary pilot studies and a two-year Postdoctoral Volunteer Summit...................9 Larsen, Ph.D., AFTD board chair. “It is Fellowship, as well as partnerships that have With Love........................10 especially important to have knowledge produced a national clinical FTD database, of this gift as the Board of Directors Food for Thought.............10 an IPS cell repository, and a drug discovery undertakes strategic planning over the program that has funded seven years of The AFTD-Team................11 next six months to develop and implement promising translational research (see page 5). 2 The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 Spotlight On... John Whitmarsh, Ph.D., AFTD Board of Directors ike many spouses of people with After Barbara’s diagnosis, the from Alzheimer’s disease for health Whitmarsh family was featured in a professionals and lay audiences.” FTD, when John Whitmarsh first segment on the NBC Nightly News started noticing personality changes in John found great comfort in with Brian Williams. John says that his wife he attributed them to a problem his support group, and it was the when AFTD approached him about with their relationship, not a problem group’s leader, former AFTD Board the segment, “I immediately said yes with Barbara’s health. During that member Joanne Sackheim, who with the hope that sharing our story time, one of her best friends stopped sparked his interest in joining the spending time with her and a coworker Board of Directors. “I felt that refused to continue working with her, my research and administrative but it wasn’t until their kids expressed experience in science would enable concern after a Christmas spent at me to make significant contribution home that John began to realize there to the goals of AFTD,” said John. might be a medical issue at hand. Having worked for NIH himself, With this new concern in mind, John has a strong focus on the research John asked Barbara to see a doctor, currently being conducted and is but she refused for months. When optimistic about the advances that she finally agreed, she went through AFTD’s recent increase in funding numerous physicians, tests, and an could bring. “To date we have had initial diagnosis of Alzheimer’s disease. very little money to work with and Finally, a neurologist recognized the yet have made remarkable impact,” initial signs of FTD on an MRI that John Whitmarsh, Ph.D. said John. “My goal would be to had been performed two years earlier, use the funding to leverage more when Barbara was still functioning would help others and accelerate funding, and to continue to focus on well in her highly demanding position research into FTD. In my view, we enabling outstanding young scientists at the National Institutes of Health. need to work to distinguish FTD to devote their careers to FTD.” AFTD News Briefs Join Us in Vancouver this October! Best Practices in FTD Care - AFTD’s Do you want to help make a Researchers and clinicians from Partners in FTD Care Yahoo Group is an difference in the lives of those affected around the world will convene for 3 on-line forum for professional and family by FTD? Have you considered days at the 9th International FTD caregivers interested in practical approaches volunteering with AFTD? Various Conference, October 23-25, 2014. to FTD symptoms. Expert clinicians and fun and rewarding opportunities AFTD is helping to organize a one- caregivers share effective strategies for care are available. Contact your regional day symposium for caregivers, which management at home and in residential coordinator volunteer to learn will be Friday, October 24. To facilities. www.groups.yahoo.com/neo/ more. Click on your state through register: www.ftdvancouver2014.com. groups/PartnersInFTDcare/info the following link to find your regional coordinator. www.theaftd. Food for Thought volunteer liaisons org/support-resources/us-regions. New Support Groups - Seven new are needed to help lead this year’s support groups have been formed, in: campaign! As AFTD representatives, See you in San Diego! AFTD’s Peoria, IL, Harris County, TX, Puget liaisons maintain contact and provide 2015 education conference will be Sound area, WA (this is an informal support to hosts who are organizing a at the Doubletree Mission Valley on group), Seattle, WA, Toronto, ON, Food for Thought event. If you would Friday, April 24, 2015. Mark your Los Angeles, CA and Fairfax, VA. For like to learn more, please contact Kerri calendars and watch our website a complete list of support groups, visit Barthel, volunteer manager, at kbarthel@ for additional information over the the regional page on AFTD’s website. theaftd.org. coming months. The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 3 AFTD’s 2014 Education Conference & Annual Meeting n Friday, March 14, 248 people description of her experiences and why O attended AFTD’s education she was eager to be involved with AFTD’s conference and annual meeting in newest resource, the AFTD Kids White Plains, NY. This was the largest and Teens website (see article page 1). attendance to date for the event, which was The afternoon focused onthe meeting in which Dr. Joel Ross designed to inform and engage the broad approaches to care management and and Dr. Richard Holub answered community of those affected by FTD: coping. It included an opportunity questions about the science and a family caregivers, health professionals, for participants to select one of five clinical drug trial of the compound people diagnosed with the disease, and breakout sessions to dig deeper into a LMTX in behavioral FTD. The study young adults with an affected parent. is currently recruiting at sites across topic of particular interest, and a panel the U.S. For more information on AFTD Board Chair Jary Larsen, PhD, discussion with a former caregiver, the study visit www.clinicaltrials.gov. welcomed participants and encouraged current caregiver and person with FTD. everyone to learn from experts and Robert Bazell, adjunct professor at Following the conference nearly 200 network with others who understand Yale University and former NBC chief people stayed to network and connect the challenges they face. The morning science and health correspondent, was with others at a dinner reception. featured an overview of FTD and the final speaker and gave the keynote Feedback from the day reflected developments in research by Dr. Edward address entitled “Making Yourselves deep appreciation for the chance to Huey, assistant professor of psychiatry Heard.” He provided examples of how to be together with people who share and neurology at Columbia University’s engage media to help promote awareness a commitment to addressing FTD. College of Physicians and Surgeons. of the disease and impact care, and One caregiver captured the feeling Jill Goldman, MS, CGC, genetic addressed questions from the audience. expressed by many: “Not only did counselor at Columbia University I get a better picture of everything Medical Center’s Taub Institute and Thirty-four people diagnosed with AFTD is doing, but I really was struck Nadine Tatton, PhD, AFTD scientific FTD attended this year’s conference by how powerful and inspiring it was director, addressed genetic research and and two participated as speakers.

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