Samuel I. Newhouse Foundation Supports $5.75M AFTD Biomarkers Initiative He Samuel I
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Volume XII, Issue 3 Fall 2015 Samuel I. Newhouse Foundation Supports $5.75M AFTD Biomarkers Initiative he Samuel I. Newhouse The issue of accurate diagnosis is not only for advancing FTD research and care: T Foundation has awarded AFTD a huge problem for patients and families, diagnostic and progression biomarkers. a grant of $5.75 million to create it is a huge barrier for researchers and their These biomarkers could then be used the FTD Biomarkers Initiative. The work to develop the first effective drugs in clinical trials to measure efficacy gift, which will be paid over of a drug being tested. five years, was announced by Donald Newhouse, president “Identifying biomarkers of Advance Publications, will foster greater attention Inc., at an October 1 event to FTD by both the academic held at One World Trade research community and the Center to kick off the first pharmaceutical industry,” World FTD Awareness Week. noted David S. Knopman, Where they have been M.D., of the Mayo Clinic identified, biomarkers are in Rochester, Minnesota, used regularly by medical Donald Newhouse, Stacie Weninger, Joanne Kotz and who chairs AFTD’s Medical professionals for diagnosing patients Donald’s daughter Kathy Mele at the October 1 event. Advisory Council, “and it will and measuring a treatment’s effectiveness. For example, in heart to treat this disease. The new initiative enable researchers to direct specific disease, blood pressure and cholesterol will focus on identifying two types of therapies to the right patients.” have long been used as biomarkers. biomarkers that are of critical importance (Continued on page 8) Inside This Issue AFTD Rolls Out Support Groups Initiative n every region, support groups play this affiliation process is ongoing for Spotlight On I an increasingly important role for both existing and newly-forming groups. Sue Laden ...........................2 the FTD caregiver community. With Benefits provided to group facilitators the support of its Board of Directors News Briefs.........................2 that affiliate with AFTD are and a generous Hearst Foundations enhancements to the informal supports Education Conference......... 3 grant, AFTD recently began rolling the organization offered previously. out a new initiative that seeks to These will include: membership in Fall Appeal ..........................3 connect support group facilitators to a network specifically dedicated to AFTD, and to connect them with improving care and support for people World Awareness Week......4 each other, in new ways. “We are facing FTD; opportunities to attend inviting current and new support group Economic Burden of FTD .....5 ongoing training by FTD experts; a facilitators to affiliate formally with forum for collaboratively developing Donations........................6-7 AFTD and receive expanded benefits,” best practices in FTD support; and explained AFTD Support Services access to AFTD resources and branded Welcome Debra..................8 Manager Bridget Moran, M.P.H. materials to promote the group and Volunteers..........................9 To date, 24 group facilitators from groups increase community recognition. in 14 states have agreed and completed The AFTD-Team ...........10-11 the affiliation process. Moran noted that (Continued on page 4) 2 The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 Spotlight On... Sue Laden, AFTD Board of Directors y father had Parkinson’s for 27 Sue and her family were AFTD’s first amazing support for people going “M years,” said Sue Laden. “And major donors, and their commitment through this process… and people my mother kept him at home and really to the organization and our community who are recently in need of comfort,” took care of him—while she also had a has grown through the years. She and her she noted. “And at the same time, our life—in an amazing way. When I asked family have set up the Laden Memorial research work is so important because her how she did it, she said: ‘You just put Fund, in memory of her husband. it has the potential to prevent or cure one foot in front of the other and you people who are suffering from FTD.” keep on walking.’” “Hang in…” she noted… “and seek As for her own role in strengthening the out through AFTD a forum where She would offer that advice to any family organization’s work: “I hope I can make now beginning a journey with FTD: you can get support from others.” as much of a contribution to AFTD as “Hang in…” she noted… “and seek out my daughter has…” she said. through AFTD a forum where you can She began serving on AFTD’s Board in Sue brings significant experience in get support from others.” spring 2015, following in the footsteps nonprofit leadership, fundraising, and of her daughter Francine Laden, Sc.D., communications — and serves as publisher Sue lost her husband, the economist whose six-year term with the Board of the Biblical Archaeology Review and Dr. Ben E. Laden — a proud and loving ended in early 2015. husband, father, brother, son and president of the Biblical Archaeology grandfather — to FTD in January 2009. Being part of an organization uniquely Society, a nonprofit, non-denominational “Nobody should have to go through dedicated to care and a cure for FTD is organization dedicated to education what all of us have gone through with part of what drives Sue’s commitment to and dissemination of information about this,” she added. service on our Board. “AFTD provides archaeology in the Bible lands. AFTD News Briefs RNA Metabolism in Neurological Thanks To AFTD Regional since 2009. Marise Rowell is now Disease meeting Coordinators taking lead of the support group for The 10th Annual Brain Research Two Regional Coordinators have parents, and Deborah Thelwell is Conference, RNA Metabolism in stepped down after many years of taking the lead of the language group. Neurological Disease, took place service. Ashley Linsmeier was a in Chicago October 15-16, 2015. South Atlantic Region Coordinator, New Support Resource AFTD and Isis Pharmaceuticals were and Katie Brandt was coordinator Caregivers of individuals diagnosed proud to co-sponsor this year’s cutting- for the New England Region. with FTD/ALS now have a new edge symposium, part of the Elsevier AFTD thanks Ashley and Katie for telephone support group. Contact Global Conferences Series. their dedicated contributions to our AFTD Support Services Manager community. Paul Taylor, M.D., Ph.D., of St. Jude Bridget Moran, M.P.H. at bmoran@ Children’s Research Hospital, and Fen- theaftd.org for more information. Biao Gao, Ph.D., of the University of the Support Group Changes Massachusetts Medical School, brought Mary Beth Riedner is stepping down Research Opportunities together basic and clinical researchers to from her role as facilitator of AFTD’s Are you seeking opportunities to share and discuss the latest findings in phone-based language group. She participate in research? AFTD RNA metabolism thought to underlie has been facilitating for the past 1 has added searchable tables to our FTD and other neurological disorders. 1/2 years. Catherine Pace-Savitsky website’s Currently Recruiting Clinical “RNA metabolism is especially complex is stepping down from facilitating Trials and Studies page. Updated in neurons,” noted Dr. Gao. “Our AFTD’s phone-based parent support quarterly, research opportunities are progress in understanding such changes group. Catherine served as AFTD’s organized by targeted condition, as has set the stage for the development of second Executive Director, and has well as the country and region where RNA-based therapeutics.” served as a support group facilitator each opportunity is located. The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 3 BECOME A MONTHLY DONOR: Help Caregivers and Families Take a Much-Needed Break Then, in August, AFTD’s Comstock “Having these amazing times together Respite and Travel Program, which helps us all to care for Parks,” added provides up to $500 to people and Griffith. families impacted by FTD, so that they can take some time to A modest grant has had a huge renew their energy, opened up new impact for the entire Griffith family. possibilities. Griffith was finally Won’t you help us make an impact able to take her 8-year-old son and on the lives of even more caregivers 10-year-old daughter on a “dream and families? trip” to the Magic Kingdom. Recurring donations allow AFTD to “Watching a parent decline like stimulate research and fund services The Griffith family: Kathleen, Parks, and this takes an emotional toll. They for those affected by FTD, such as their two children. Photo by Kathleen’s still need to be kids, to have a kid’s our Comstock Respite and Travel brother, Stephen Dey. life,” Kathleen said. “For us to Program. Become a monthly donor be able to go to Disney World … today and help establish a sustained athleen Griffith had long talked K The question of ‘Where’s Daddy?’ source of income for AFTD. about taking her children to Disney Everyone could turn that off. World, but with her husband Parks They could be kids.” The magical Use the enclosed envelope, or visit Griffith facing FTD and Kathleen his getaway lasted just four days, but it www.theaftd.org/get-involved/ways- primary caregiver, it just wasn’t an option. had a lasting effect. to-give/monthly-giving. Save the Date: 2016 AFTD Education Conference lanning is now underway for Alvin C. Holm, M.D. of Bethesda Registration for the Education P the 2016 AFTD Education Hospital/HealthEast Care System. Conference will open in January Conference – please save the date! 2016. Currently, AFTD has The Conference will be corporate and individual held in Minneapolis on conference sponsorship May 13th, 2016 at the opportunities available. For DoubleTree by Hilton more information about Hotel Minneapolis- sponsorship opportunities, Park Place.