Making a Difference: AFTD Introduces First-Ever Advocacy Agenda
AFTD has unveiled a robust and ambitious advocacy agenda for 2025, emphasizing the urgent need to better support families facing FTD while pushing for deeper public investments into FTD research and drug development. “This year, AFTD is poised to have a greater impact than ever before in advancing federal and state policies that provide real,…
Read MoreIn TEDx Talk, Neuroscientist Shares Her Father’s FTD Story and Her Hope for Dementia Research Breakthroughs
Leila Allen, PhD, of Florida International University (FIU), discussed the groundbreaking dementia research that she and her colleagues are performing with pig models and artificial intelligence during a recently published TEDx Talk. Dr. Allen, the founding director of FIU’s Behavioral Neuroscience Program, also spoke about her late father’s diagnosis of behavioral variant FTD. Even though…
Read MorePanera Bread Restaurant Giveback Fundraiser
Sandra Gonzalez-Morett and Alma Valencia are hosting a Restaurant Giveback Fundraiser at Panera Bread located at 300 N Brand Blvd, Glendale, CA 91203 on Friday February 7, 2025. This fundraiser will be taking place 4:00pm-8:00pm at this location only. 20% of the proceeds that night will be donated to AFTD’s mission so come out and…
Read MoreExtracellular Vesicles in Plasma Could be FTD-ALS Diagnostic Biomarker, Study Finds
A study published in Nature Medicine finds that a type of particle associated with specific cell subtypes could potentially be utilized as a biomarker for FTD and ALS disorders. The particle, known as an “extracellular vesicle,” contains tau and TDP-43 proteins, which are both altered with FTD-ALS. Extracellular Vesicles Facilitate Spread of FTD Proteins Extracellular…
Read MoreDenali and Takeda Open FTD-GRN Clinical Trial Site at UPenn
Denali Therapeutics and Takeda Pharmaceutical Company’s phase 1/2 clinical trial for FTD caused by GRN mutations is opening its first U.S.-based trial site at the University of Pennsylvania (UPenn). The multicenter study is evaluating the safety and tolerability of the drug DNL593 in people with and without FTD. DNL593 Reintroduces Progranulin Through Intravenous Delivery In…
Read MoreTips & Advice: Incontinence – A Troubling Symptom
Incontinence is a common symptom of FTD and other dementias. But for both care partners and persons diagnosed, incontinence can be one of the more difficult symptoms to manage or even talk about, given its associations with private bodily functions and a perceived loss of dignity and independence. As FTD progresses, some persons diagnosed become unable…
Read MoreOnline Event – Genetics of FTD and Genetic Research
Join AFTD for the Alzheimer’s San Diego online panel discussion, in which Kim Jenny, MS, LCGC, AFTD’s Manager of Genetic Initiatives, and Dr. Alison Goate, Chair of the Department of Genetics and Genomic Sciences at the Icahn School of Medicine at Mount Sinai, will discuss the links between genetics and frontotemporal degeneration and other young…
Read MoreOhio Care Partner Shares Story to Help Others on the FTD Journey
Mary Kay Verhoff, a former FTD care partner from Ohio, recently published a book that tells the story of coming to terms with and navigating her husband’s decline from FTD. Published in July, “Just Breathe: A Caregiver’s Journey Through the Depths of Dementia” has 39 five-star reviews on Amazon, where it is available as a…
Read More2025 TD Five Boro Bike Tour
The AFTD-Team is an Official Charity Partner of the 2025 TD Five Boro Bike Tour, taking place on May 4! We’ve been allotted 10 guaranteed entries to the event. To be awarded an entry, each person must fundraise $500 for AFTD’s mission. If you’re interested in participating on the AFTD-Team for this event, please contact…
Read More2025 Los Angeles Marathon
Join select AFTD staff and members of the local community as we bring greater FTD awareness to the surrounding Los Angeles area and raise funds to help people affected by FTD. The AFTD-Team will participate in the Los Angeles Marathon on March 15-16 as an Official Charity Team. We hope you’ll join us for a…
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