Young Caregiver Talks About Finding Support Amid FTD Journey on Dementia UK Podcast
A young FTD caregiver named Lizzie discussed the grief, uncertainty, and unexpected responsibilities she faced as she cared for her father — all while navigating the natural changes of young adulthood — in a recent interview with “My Life With Dementia,” a podcast produced by the organization Dementia UK. When Lizzie graduated from college, she…
Read MorePerspectives in FTD Webinar: FTD Research 2024 — Where We’ve Come From and Where We’re Headed
The science of FTD is evolving at a rapid pace and it can be difficult to interpret the scientific advancements and how they may impact families facing an FTD diagnosis. In this Perspectives in FTD Research webinar, presented jointly by AFTD and the FTD Disorders Registry, AFTD’s Senior Director of Scientific Initiatives, Penny Dacks, PhD,…
Read MoreAFTD Webinar: Care Partner Learning Series — Navigating the Holidays with an FTD Diagnosis
The changes brought on by an FTD diagnosis can make navigating the holidays difficult. The routine changes of travel, large crowds, and busy days can lead to unsuccessful holiday experiences. Please join AFTD HelpLine Manager Stephanie Quigley and members of the Persons with FTD Advisory Council as they share ideas and ways they have adapted…
Read MoreAdvancing Hope: AFTD Staff Attend NORD Breakthrough Summit in Washington, DC
Shana Dodge, PhD, AFTD’s Director of Research Engagement and Meghan Buzby, MBA, AFTD’s Director of Advocacy and Volunteer Engagement attended the National Organization for Rare Disorders (NORD) Breakthrough Summit, held October 20-22 in Washington, DC. NORD is an advocacy organization dedicated to individuals with rare diseases and is committed to the identification, treatment, and cure…
Read MoreGemVax & KAEL Announces Results from Phase 2a Clinical Trial for PSP
South Korean biopharmaceutical company GemVax & Kael announced in late October the results from its phase 2a clinical trial evaluating a drug for PSP. While the drug failed to show significant efficacy, the results showed enough promise that the company is proceeding to phase 3 trials. PSP, or progressive supranuclear palsy, is an FTD disorder…
Read MoreDear HelpLine: Navigating Travel During the Holidays
Dear HelpLine, I am thinking of traveling to see family this year for the holidays, but this would be the first time taking my wife since she was diagnosed with FTD 2 years ago. Is there anything you can share with me about traveling with someone with FTD? For many people, the holiday season is…
Read MoreA Conversation with Alector’s Vice President of Clinical Development
Earlier this year, the biopharmaceutical company Alector announced that the U.S. Food and Drug Administration (FDA) had granted a “breakthrough therapy designation” to latozinemab, the company’s investigational drug designed to address FTD caused by a variant in the GRN gene. The special designation enables expedited regulatory review of therapies intended to treat serious conditions. A…
Read MoreVesper Bio Announces Successful Completion of Phase 1 Study for Potentially Disease-Modifying Treatment for FTD-GRN
Biotechnology company Vesper Bio announced in early September that the phase 1 clinical trial for its potentially disease-modifying treatment for FTD-GRN has successfully concluded. The company noted data from the trial demonstrated excellent safety and tolerability of the orally administered drug VES001. In FTD caused by an inherited GRN mutation, the production of the essential…
Read MoreNovember 24, 2024: In-Person Meet & Greet in Manchester, NH
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event, hosted by AFTD Ambassador Shirley Gordon and Kevin Rhodes, co-chair of the AFTD Persons with FTD Advisory Council. The event will take place from 7:30 a.m. – 12:00 p.m. on November 24 at St. Catherine of Siena…
Read MoreIn-Person Meet & Greet in Manchester, NH
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event, hosted by AFTD Ambassador Shirley Gordon and Kevin Rhodes, co-chair of the AFTD Persons with FTD Advisory Council. RSVP for this event by emailing sgordon@theaftd.org. To learn more, download this flyer.
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