Tips & Advice: Finding Answers – FTD Research and You
When Damian McNamara, a staff writer for WebMD, learned that his cousin had been diagnosed with ALS and FTD due to a C9orf72 genetic variant, he began to wonder if he should undergo genetic testing. After all, his maternal grandmother and aunt also had ALS, and FTD research discovered that C9orf72 can cause either disorder,…
Read MoreAdvancing Hope: AFTD Attends C9orf72 FTD/ALS Prevention Trial Workshop
A one-day C9orf72 FTD/ALS Prevention Trial Workshop was held in June 2024. The workshop was led by Dr. Adam Boxer (UCSF) and Dr. Michael Benatar (University of Miami) and enabled by AFTD and the ALS Association. More than 30 scientific experts attended the meeting from academia, biopharma, advocates, nonprofit organizations and the US Food and…
Read MoreCare Partner Emphasizes the Benefits of Support from Others Who Understand FTD
Navigating the FTD journey is much less daunting when you have support from others who have lived with the disease themselves, Canadian care partner Mardi Denis said in an article published on the website of The Province, a Vancouver newspaper. Denis, a retired occupational health nurse, said that she was confused and concerned when her…
Read MoreOpinion Column Highlights Racial Disparities in Dementia Care and Need for Support
An opinion column published in the Los Angeles Daily News highlights healthcare-based racial disparities that often leave the Latino and Black/African American communities without proper dementia care. Author Patricia A. González-Portillo shares her family’s experiences with her father’s dementia to illustrate the gap in dementia care. González-Portillo’s father experienced symptoms for more than 20 years,…
Read MoreVolunteer Update: AFTD Welcomes New AFTD Ambassadors
Since the AFTD Ambassador Program began in 2019, our initial cohort of volunteer leaders has grown into an enthusiastic and highly motivated group working toward a future free from FTD. AFTD is pleased to welcome two new members to the group, bringing the program to a total of 20 Ambassadors. Zoy Kocian | Texas Zoy learned about…
Read MoreIn-Person Duke Caregiver Community Event
AFTD volunteer Ambassador Jerry Lazarus and volunteer Paul Lester will be hosting an information table on behalf of AFTD at the In-Person Duke Caregiver Community Event on September 5 from 8 AM – 4:30 PM EDT. Go to the event website to learn more or register.
Read MoreA Conversation with Olga Uspenskaya, MD, PhD, of Prevail Therapeutics
Recently, Prevail Therapeutics presented interim results from their Phase 1/2 open-label clinical trial assessing the safety and efficacy of their gene therapy to raise progranulin levels in people with FTD-GRN. Not only was the treatment generally safe and well-tolerated among participants, but progranulin levels in the cerebrospinal fluid increased immediately following a one-time administration and…
Read MorePassage Bio Receives Positive Feedback from FDA on Expanding Gene Therapy to C9orf72
Biopharmaceutical company Passage Bio announced on July 16 that it has received positive feedback from the U.S. Food and Drug Administration (FDA) regarding a proposal to expand its clinical trial for a gene therapy for people with FTD caused by a variant in the GRN gene to also include people with FTD caused by the…
Read MoreResearcher Explains the Role of Genetics in FTD, Discusses Avenues for Treatment
In an article written for The Conversation, Fen-Biao Gao, PhD, professor and founding director of the FTD Research Center at the University of Massachusetts Chan Medical School, discusses how research into the genetic aspects of FTD has opened up potential avenues for treatment. “Since researchers identified the first genetic mutations that cause FTD in 1998,…
Read MoreManaging a Diagnosis: Brian’s FTD Story
In 2020, when Brian Dowden was in his late 30s, he noticed changes in his cognitive abilities while preparing to take the licensing exams required by his profession. “It was supposed to be an easy test for the most part,” he said. “I started studying and immediately began to struggle. I just couldn’t retain the…
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