AFTD News Spring 2021
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Volume XVIII, Issue 1 Spring 2021 Newhouse and Holloway Gifts to Advance AFTD’s Mission dedicated to making the journey easier for other families. Mr. Newhouse created The Donald and Susan Newhouse Fund with a gift of $20 million, the largest single donation in AFTD’s nearly two-decade history. The Fund is named in honor of his late wife, who died of FTD, as did Mr. Newhouse’s Donald and Susan Newhouse brother, Si. Lee and Kristin Holloway AFTD is grateful to announce the Kristin Holloway has created The Fund will accelerate and deepen the creation of two new funds, supported Holloway Family Fund, supported by an organization’s work across our mission by generous gifts from Board members, initial gift of $2 million and with a plan areas of research, support, education, that will help AFTD expand, innovate, to donate $1 million each year for an awareness, and advocacy. The gift is and drive our mission to create a future additional eight years. The fund aims to unrestricted, and will be allocated after free of FTD. further the understanding of FTD; drive planning by Board and staff. In its scope basic, clinical and translational research; and generosity, it will empower AFTD The Board members, Donald E. and accelerate the path toward effective to deepen and broaden the vision of Newhouse and Kristin Holloway, have treatments and cures. our current strategic plan (available both had their lives unalterably affected online at theaftd.org/strategic-plan). by the disease, and are passionately The Donald and Susan Newhouse (Continued on page 5) INSIDE THIS ISSUE FTD Disorders Registry Announces Spotlight on... Its First Strategic Plan Kristin Schneeman.............2 Since 2017, the FTD Disorders Registry has “This is an important moment for the Registry,” News Briefs..........................2 provided a secure, centralized platform for said AFTD Senior Director of Scientific Initiatives persons diagnosed, caregivers, and families Penny Dacks, PhD. “The Strategic Plan, developed to connect to research participation in collaboration with our partners, allows us Spring Appeal.......................3 opportunities and to evolve from a start- share their day-to- up into a long-term PFDD Meeting......................4 day experiences sustainable organization of living with with a worldwide reach.” Education Conference.........5 FTD. Each story advances the “The first pillar of the Donations..........................6-7 research of FTD to Strategic Plan involves hasten treatment development. creating a more robust infrastructure that includes genetic data,” said Registry Director Dr. Fauci Discussion...........8 The Registry (ftdregistry.org) now presents Dianna Wheaton, MS, PhD, CHES. its first formal Strategic Plan, designed to Helping Hands.....................9 Dr. Dacks, who also serves as president of expand its reach and continue providing the Registry, added, “We’re already HIPAA- value for participants and researchers. Volunteers.............................9 compliant, but a technology upgrade is needed Four strategic pillars and goals inform the for the Registry to better reach international plan: Infrastructure, growth, partnering The AFTD-Team...........10-11 communities.” and collaboration, and sustainability. (Continued on page 8) 2 The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 Spotlight on…Kristin Schneeman, AFTD Board of Directors Kristin Schneeman began her Director of Programs at FasterCures, [didn’t] know a whole lot more relationship with AFTD in 2019, when a Washington, DC think tank that than that,” she said. “Now that we she led a discussion on is part of the Milken know what his situation was, we’re the concept of “patient- Institute’s Center for fairly confident that his mother and driven philanthropy” Accelerating Medical brother had the same condition, so for the AFTD Board. Solutions. Through we may have a familial variant.” her work, Schneeman Since then, she has As an AFTD Board member, and her team focus on served as a member Schneeman hopes to continue to how patient-driven of AFTD’s Research provide more of her professional philanthropy can act as a Committee, where she knowhow to the organization while catalyst for accelerating provided her expertise “filling in the gaps in the research change in the medical and insight on ways that landscape” to help further AFTD’s Kristin Schneeman research ecosystem. nonprofits and other mission. disease-focused organizations can have a greater impact on engaging While Schneeman has worked She is also eager to learn more the people and community about AFTD’s existing work “I felt like I had something to offer to help [AFTD] move its they serve. in advocacy, education, mission along,” said Schneeman, whose father had FTD. and support for caregivers “I bring this broader and persons diagnosed. perspective of how foundations alongside other healthcare Historically, she said, AFTD has are engaged in research and organizations, she was particularly been “very thoughtful about its role development that seemed like it drawn to AFTD because of her own and its approach in doing a lot of could be useful,” she said. “I felt like connection to the disease: Her father, important things.” I had something to offer to help Dr. Peter Schneeman, died of FTD- Schneeman lives in Connecticut [AFTD] move its mission along.” related complications in 2007. with her husband, Ezra Greenberg, Since 2005, Schneeman has been “My father had a diagnosis and we and their daughters. AFTD News Briefs AFTD Awards 2020 Pilot Grants A Successful AFTD Virtual Volunteer Leadership Summit! AFTD Pilot Grants – our longest-running funding program – provide critical support to early-career investigators AFTD’s inaugural team of Ambassadors recently gathered and encourage them to become lasting contributors to with staff for a 4.5-hour virtual volunteer leadership FTD research. The 2020 Well-Being in FTD Pilot Grant summit. Volunteer expert and AFTD consultant Sheri was recently awarded to Allison Lindauer, PhD, of Oregon Wilensky Burke facilitated the successful meeting. Kerri Health & Science University. Dr. Lindauer’s project will Keane, AFTD Volunteer Manager, said, “Time was well customize an existing telehealth program (STELLA) to spent equipping our leaders as representatives to broaden address the unique needs of FTD caregivers, based on and expand their reach across the country.” Some of the input from the caregivers themselves. Maria Catarina topics covered included strategies for achieving goals, Silva, PhD (Massachusetts General Hospital), was awarded building relationships, and having a positive impact the 2020 Basic Science Pilot Grant to study a class of during COVID-19. “It is a great feeling to know that I drugs that ramp up the process responsible for removing am part of a winning team of wonderful, caring people,” damaged or dysfunctional proteins, known as autophagy, said AFTD Ambassador Jerry Horn of Alabama, while to determine if – and how – they reduce the abnormal Ambassador Melissa Fisher of Oregon said, “I walked accumulation of the FTD-associated protein tau. away inspired and feeling valued.” The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 3 4 The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 AFTD Hosts Successful Externally Led Patient-Focused Drug Development Meeting AFTD hosted an Externally Led burdensome, and what you would former caregivers. Participants Patient-Focused Drug Development want most from an approved therapy.” answered live FTD-related polling (EL-PFDD) meeting on March 5, questions; many called in to share EL-PFDD meetings help to ensure that allowing persons diagnosed and personal stories of themselves or the experiences, perspectives, needs, current and former caregivers a loved ones. Viewers were also able and priorities of persons affected by valuable one-time opportunity to to send in written comments about a specific disease are captured and inform the development of federal their experiences. (Visit tinyurl.com/ meaningfully incorporated into the regulatory processes for potential AFTD-PFDD to learn more.) FTD therapeutics. FDA’s drug-regulation process. These Following the EL-PFDD meeting, An estimated 550 people joined The AFTD-led PFDD meeting featured live AFTD will prepare a report the interactive livestream, hosted input from persons diagnosed, as well as summarizing these testimonies. by AFTD CEO Susan L-J Dickinson current and former caregivers. Known as a “Voice of the Patient” and James E. Valentine, who report, these summaries are a key previously worked with the FDA. meetings help the FDA to understand resource for FDA regulators to help what it’s like to live with a particular better understand what people living “To the people and families from disease with an insider’s perspective with FTD and their care partners/ around the world who live the FTD of its symptoms and how they affect journey every day, this meeting daily living. caregivers most want to see in is for you,” Dickinson said during treatment options. the meeting. “It’s your chance to The AFTD-led PFDD meeting ensure that the FDA understands featured live input from persons The Voice of the Patient Report the urgent need for FTD treatments, who are either diagnosed with FTD will be publicly available on AFTD’s which symptoms you find the most themselves or who are current or website for review. The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021