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Watch the 2020 World FTD Marathon…
On October 3, World FTD United, an international coalition of FTD-focused organizations, delivered 17 consecutive hours of FTD awareness and information with the first-ever World FTD Marathon — all of which is now available to watch on YouTube. AFTD, a…
Building a Future Free of FTD: AFTD’s 2020 Annual Report
AFTD’s 2020 Annual Report documents progress made in the fiscal year commencing July 1, 2019 and ending June 30, 2020. Through donor support, AFTD advanced the key areas of our mission — research, advocacy, awareness, education and support. Our 2020…
When the Conversation Stops: Logopenic Variant Primary Progressive Aphasia
Partners in FTD Care, Fall 2020 Download the full issue (pdf) Primary progressive aphasia (PPA) is a neurodegenerative disease that affects the parts of the brain responsible for speech and language, resulting in the gradual loss of the ability to speak,…
AFTD-Backed Research Offers Insights into C9orf72 Protein Structure
New AFTD-funded research published in Nature provides important insights into the structure of the C9orf72 protein, which when mutated, is recognized as the most common genetic cause of both FTD and ALS. While the C9orf72 mutation is genetically implicated in…
AFTD Volunteer Talks #FTDhotshotchallenge in Canadian Newspaper
AFTD volunteer Amanda Dawson explains how the #FTDhotshotchallenge is helping to raise awareness of FTD — and increase hope for a future without this disease — in an article published in the Minden Times on October 13. Dawson’s father, Dr….
AFTD Seeking Community Input Ahead of Patient-Focused Drug Development Meeting
On March 5, 2021, AFTD will host a Patient-Focused Drug Development meeting with representatives of the U.S. Food and Drug Administration. The meeting presents a unique chance to speak directly to the federal agency that regulates every prescription drug that…
Washington Post Details Impacts of COVID Isolation on Families Facing Dementia
As families facing FTD continue to also contend with the challenges of navigating the COVID-19 pandemic, the Washington Post sheds light on the devastating effects of care facility isolation during this difficult and unprecedented time. In a heartbreaking account of one family’s…
Alabama Family Shares FTD Journey, Speaks to Importance of Connection
Although FTD has robbed Gene Guy of the ability to talk, he still communicates with his daughter, Amber, every day. While he may be unable to tell her he loves her, she still knows. A computer programmer with a passion…
AFTD Highlights Mom’s Story in Latest N.Y. Times Awareness Ad
The Sunday, October 4 issue of the New York Times features the story of Jennifer Lee, a woman living with FTD, in the latest in a series of FTD awareness ads to run in the Times. The ad, which appears…
Researchers Explore Mechanisms Behind TDP-43 Clumping, Test Investigational Drug
A team of researchers has shown for the first time how toxic proteins produced by the mutated C9orf72 gene stimulate protein clumps that can result in the neurological decline associated with FTD, and point to an investigative drug that may…