Volume XVIII, Issue 2 Summer 2021 AFTD’s 2021 Education Conference Offers Resources, Support, Hope AFTD’s 2021 Education Conference, held on the Culture of Dementia Care.” May 13 and May 14, took place entirely online, with more than 1,200 registrants from around Dr. Powell, the director of the Montefiore the world taking the opportunity to find help Einstein Center for Bioethics at the Albert and share hope. Einstein College of Medicine, spoke about steps necessary to deliver For those unable Find help and share hope online: Most of the sessions the most efficient, to watch the from AFTD’s 2021 Education Conference are available to high-quality care to conference live, watch at aftdconference.org. persons diagnosed, most sessions emphasizing the from this year’s need to adequately Education Conference were recorded and train, support, and compensate professionals can be viewed at aftdconference.org. who provide dementia care. Dr. Tia Powell, author of Dementia “The pay for people [working] in dementia Reimagined: Building a Life of Joy and Dignity is poor,” she said. “At the same time, there’s from Beginning to End, opened the Education a growing need. There are more and more Conference with her session, “Transforming people, not fewer, getting dementia.” (Continued on page 4) INSIDE THIS ISSUE Spotlight on... ALLFTD Study Recruiting Rita Choula............................ 2 Participants to Help Further News Briefs........................... 2 Understanding of FTD Summer Appeal....................3 ALLFTD, the North American consortium of Rosen of the University of California, San FTD-focused research centers, is recruiting Francisco (UCSF). Drs. Boeve and Rosen Education Conference.........4 participants in a longitudinal study that are members of AFTD’s Medical Advisory aims to examine how FTD progresses and New AFTD Grants..................5 Council. presents itself over the long term to better prepare for clinical trials. Donations........................... 6-7 Launched in 2020, ALLFTD combines two FTD-focused More participation will allow researchers to better Funded by the research studies: Global Conversation on FTD..8 understand the natural FTD history, develop National Institutes Advancing biomarkers, and create an FTD clinical trial network. NYS Advocacy Day................. 8 of Health, ALLFTD Research and comprises 18 site Treatment for Helping Hands.......................9 centers that enroll persons diagnosed Frontotemporal Lobar Degeneration with a variety of FTD-related disorders (ARTFL) and Longitudinal Evaluation of Volunteers...............................9 and syndromes. The cooperative study is Familial Frontotemporal Dementia Subjects co-directed by Dr. Brad Boeve of the Mayo (LEFFTDS). The AFTD-Team.............10-11 Clinic and Drs. Adam Boxer and Howard (Continued on page 5) 2 The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 Spotlight on…Rita Choula, AFTD Board of Directors Before Rita Choula’s mother died diagnosed Bryant with Alzheimer’s. not ignore. “This is a passion for me, last October following a decade- But Choula, Director of Caregiving at to be able to turn and give back so plus journey with the AARP Public Policy that [other families] don’t have to behavioral variant Institute in Washington, walk down that same journey – or FTD last year, she told D.C., knew enough that journey doesn’t have to be as her daughter to do about the disease and its difficult as mine was.” two things: be bold symptoms to question and take risks. Choula that assessment. Bryant She also aspires to continue says that her mother’s was finally diagnosed conversations that center the advice will guide her with bvFTD at age 60, and perspectives and experiences of tenure on the AFTD died at 72. Black, Indigenous, and people of color Board, which began (BIPOC) and other underrepresented The family’s inability identities among the community earlier this year. Rita Choula to get an accurate AFTD serves. “That [advice] is so applicable to the early diagnosis “took away a lot of work we are doing at AFTD,” Choula opportunity for us to just be with her,” “It’s about elevating BIPOC leaders said. “AFTD is a small – but powerful Choula said. “So much of our journey within these caregiving communities and mighty – organization. and engaging with diverse I [couldn’t] turn away from Working with fellow AFTD Board members “is a passion for professional organizations this. I can’t have walked me, to be able to turn and give back so that other families to make sure they’re aware this journey and have gone don’t have to walk down that same journey.” and are able to send their through what my family messages out,” Choula said. “I went through to turn my back and was me figuring it out and having to want to continue sharing the stories say, ‘it’s over.’” educate professionals on it.” of diverse individuals and families that are living with FTD. If we don’t Choula said that she is motivated to Reflecting on her personal and know certain things, we don’t know help further AFTD’s mission due to her professional experiences in dementia how to engage. If we’re asking people family’s struggle to obtain a correct caregiving, Choula said that the to share their story and we want diagnosis for her mother, Theresa chance to join AFTD’s Board is an to develop and build a welcoming Bryant. Neurologists originally “opportunity and a calling” she could family, we have to welcome all.” AFTD News Briefs AFTD to Begin Strategic-Planning Process AFTD Welcomes New Ambassadors AFTD staff and Board have begun the process that will In December 2019, AFTD launched a new volunteer leadership result in a new organizational Strategic Plan, which position: AFTD Ambassadors, who represent AFTD within will guide AFTD’s work and establish our priorities a defined geographic area, working to raise awareness, beginning in July 2022. Numerous stakeholders and educate, and build connections at the local level. For the experts, many of whom have lived experience of FTD, first time since establishing this role, the Ambassador team will contribute to its development. The most recent is expanding! Our newest Ambassadors are Dr. Jerry Lazarus AFTD Strategic Plan, which took effect in January (NC), Dawn Ducca (MI), Marc Toles (MI), Dawn O’Gara (MA) 2019, has lent clarity to AFTD’s work in our mission to and Susan Eissler (TX). AFTD’s Ambassador team now totals improve the quality of life of people affected by FTD 14 dedicated individuals across 12 states. We are grateful to and drive research to a cure; it is available to download all our Ambassadors for their time, energy, leadership, and under the About Us tab on theaftd.org. commitment to supporting AFTD’s mission. The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 3 4 The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 Education Conference (Continued from page 1) Dr. Adam Staffaroni, a FTD and Young-Onset Dementias need to understand the geographic neuropsychologist at the Clinic at Johns Hopkins University distribution of syndromes as University of California San (and a member of AFTD’s Medical well as the larger population and Francisco’s Memory and Aging Advisory Council). Dr. Onyike’s genetic risk factors; that’s going to Center, used his session to provide presentation, entitled “Cultural be crucial for screening.” “Updates on Major FTD Research Perspectives in FTD,” summarized Initiatives.” He talked about why emerging efforts to understand The Education Conference natural-history studies of FTD, FTD across global geography and featured 18 sessions, including four such as ALLFTD, are so important diverse cultures, and the many breakout sessions on each day, for understanding how the disease challenges in this work. with over 30 speakers total. AFTD’s progresses over time, and for recently chartered Persons helping to shape (and recruiting A wide range of leading FTD experts and with FTD Advisory Council led potential participants for) researchers provided a global audience with two sessions. The conference treatment trials. the latest information and resources. also encouraged audience participation via live, interactive Additional featured speakers To effectively ensure that all polls, Q&As, and community chat included Dr. Elizabeth Finger impacted by FTD receive the sessions. of Western University, who diagnoses and care they need, Dr. discussed emerging and current Onyike said, “we need language Visit aftdconference.org to watch FTD clinical trials, as well as Dr. and cultural translations of clinical select sessions from the Education Chiadi Onyike, director of the measures to make that happen. We Conference. The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 5 AFTD Announces New Drug Discovery Grant and Postdoctoral Fellowship Recipients AFTD has recently announced new professor of neuroscience at Cornell represent the earliest signs of the FTD awards supporting research to advance University, will work to improve a group disease process. Building on work carried the science of FTD and, hopefully, of compounds developed by her team out by former AFTD Postdoctoral Fellow hasten a future free of this disease. that block free radicals that can trigger Dr. Ming-Yuan Su, Dr. Shin will devise protein accumulation and inflammation strategies for the development of drugs Since 2007, AFTD and the Alzheimer’s in brain cells – a potentially promising that restore normal lysosome function Drug Discovery Foundation have new approach to treating FTD. in C9orf72-associated FTD. Finally, Dr. partnered to fund the Nolan will use gene editing, stem cells, Accelerating Drug Discovery New AFTD-funded research points to promising and animal models to advance our in FTD grant program, which new approaches to treating the disease, as well as understanding of the role of RNA supports preclinical research on detecting it early in the disease process. binding proteins in FTD, and seek promising new or repurposed to identify and evaluate new drugs drugs to treat FTD.