Doctor Living with FTD Discusses Life Post-Diagnosis in Interview
In an interview recently broadcast by Atlanta News First, former gynecologist Dr. Seth Stern discussed his work to spread awareness of FTD and his desire to live life to the fullest following his FTD diagnosis. In a Wall Street Journal article published earlier this year, Dr. Stern shared that he first began to notice that…
Read MoreVolunteer Update: Giving Purpose to the Pain – Becoming an AFTD Ambassador and FTD Advocate
AFTD Ambassadors know the power of a single story and the healing potential of finding others who understand. Ambassadors are volunteer leaders who represent AFTD in communities across the U.S., raising awareness through their lived experience of FTD while also leveraging their experiences to help others on the FTD journey. For Dawn Kirby, a former…
Read MorePedacito de Carne at the 2023 Montclair Film Festival
Join filmmakers Diana Gonzalez-Morett, Akilah “AK” Walker, and AFTD Ambassador Sandra Gonzalez-Morett at the 2023 Montclair Film Festival this Saturday to share the lived experience of FTD and raise awareness of the disease! Tickets can be purchased by clicking the link below; be sure to use the discount code MFF23-FLM Click Here to Purchase Tickets
Read MoreDear HelpLine: Long-Distance Care Partners
Dear HelpLine, My dad was recently diagnosed with FTD. I’m devastated by the diagnosis, but I live in another state. How can I support him? How can I get support for myself? An FTD diagnosis often has a far-reaching impact not only on the person living with FTD and their primary care partner but on…
Read MoreWebMD Staff Writer Shares His Experience as an ALLFTD Participant
WebMD staff writer Damian McNamara, MA, shared his experiences as an ALLFTD participant in a post published on the website’s blog. “I always figured I would stay a safe distance — write and summarize study findings and medical advances for Medscape and WebMD,” McNamara said. “Keep it professional, stick to the science, and report the…
Read MoreAviadoBio Begins Clinical Trial to Evaluate AVB-101 for Treatment of FTD
Today, AviadoBio announced the start of its Phase 1/2 clinical trial to evaluate AVB-101 as a one-time treatment for candidates who have the progranulin (GRN) genetic variant. AFTD applauds AviadoBio’s innovative approach to treating frontotemporal degeneration (FTD). AVB-101 is an investigational gene therapy that will be delivered using a minimally invasive neurosurgical procedure on the…
Read MoreAdvancing Hope: FTD Disorders Registry Deploying Upgraded Platform Under New Director
The FTD Disorders Registry is a powerful tool in the effort to discover treatments and a cure for FTD, leveraging the stories of persons diagnosed with FTD, their caregivers (both current and former), and family members to spur innovation. By sharing their insights and experience with the Registry, more than 6,200 people have already provided…
Read MoreCase Report Co-Authored by AFTD Board Member Highlights Varying Presentations of FTD-GRN
A case report recently published in the journal Clinical Parkinsonism & Related Disorders highlights how even between people with the same variant of genetic FTD caused by a GRN mutation (FTD-GRN), the presentation of the disease can vary greatly. The study was co-authored by AFTD Board member and assistant professor of medicine at Johns Hopkins…
Read MoreAFTD Webinar: Answering Questions and Providing Support — A Q&A with AFTD HelpLine Staff
Understanding and managing FTD can be overwhelming for those living with a diagnosis, their care partners, and healthcare professionals. The AFTD HelpLine is here to provide support. Last year, HelpLine staff connected more than 3,000 people with essential information, resources that aid in managing the disease, and ways to find further assistance. In this AFTD…
Read MoreU.S. Rep. Jennifer Wexton Announces Progressive Supranuclear Palsy Diagnosis
Representative Jennifer Wexton of Virginia announced last week that she would not be seeking re-election after receiving a diagnosis of progressive supranuclear palsy (PSP). In April, Wexton announced that she had been diagnosed with Parkinson’s disease (PD). At the time, Wexton was having difficulty speaking, walking, and keeping balanced. Yet as she navigated the challenges…
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