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 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…
Read MoreLorain County Senior Expo
AFTD volunteer Sharon Land will be hosting an information table at the Lorain County Senior Expo on September 10 from 10 AM-1 PM EDT. Go to the event website to learn more or register.
Read MoreMental Health in Underrepresented Communities: Reducing Stigma & Overcoming Barriers
AFTD volunteer Sharon Land will be hosting an information table at the event Mental Health in Underrepresented Communities: Reducing Stigma & Overcoming Barriers, being held at the YWCA of Elyria on Wednesday, July 31 from 12-2 PM EDT. Visit the event webpage to learn more or register.
Read MoreBritish/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 angiogenin (ANG) gene and ALS-FTD, according to a study published in The Journal of Pathology. It is now recognized that a pathogenic expansion of the…
Read MoreAFTD and ALLFTD Collaborate on Brain Donation Video
AFTD and ALLFTD have partnered to create a brief animated video that explains the brain donation process, as well as how it helps FTD researchers and families affected by FTD. Discussing brain donation can be difficult for families, so beginning the conversation early can provide family members with the time to consider options, share preferences,…
Read MoreDear HelpLine: Support for Familial and Genetic FTD
Dear HelpLine, My mom was recently diagnosed with FTD; my late uncle and grandmother had dementia, and I’m concerned that this may be genetic. Is there support for people facing uncertain genetic status? Most people diagnosed with FTD have a sporadic form of the disorder, meaning there is no apparent familial history of neurodegenerative disease.…
Read MoreAdvocate for Awareness: Working with Lawmakers to Highlight FTD
FTD advocates can help bring awareness to their communities by working with lawmakers to issue proclamations and resolutions designating a statewide FTD awareness week. But what are proclamations and resolutions, and how can advocates push for them? In this Advocacy Webinar, AFTD staff will explain the difference and share the steps that you can take…
Read MoreFTD: The Other Dementia
AFTD Ambassador Nanci Anderson will provide an overview of FTD, along with available resources available in the Twin Cities and from AFTD. Download this flyer to learn more.
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