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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…
Advancing 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…
Care 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…
Opinion 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.…
Volunteer 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…
A 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.…
Passage 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…
Researcher 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…
Managing 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…
British/Dutch Study Discovers Role of ANG Gene Mutations in ALS-FTD
Researchers at the University of Bath in the United Kingdom and the University Medical Center Utrecht in the Netherlands have uncovered an association between an inherited genetic variant of the…
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