New York Sen. Michelle Hinchey, Emma Heming Willis Join Families of People With Frontotemporal Degeneration To Call For Increased Awareness And Research Into Underdiagnosed Disease
The conference also featured an art exhibit with works by people with frontotemporal degeneration (FTD); the disease can spark creativity in some people Houston, Texas — New York State Sen. Michelle Hinchey spoke Friday about her pioneering work advancing legislation to increase FTD awareness and research at the AFTD 2024 Education Conference to more than…
Read MoreDear HelpLine: Brain Donation
Dear HelpLine, How do we learn more and start the process of arranging a brain donation for FTD research? Brain donation can be a difficult topic to consider and discuss, and every family should have the space to make the decision that is best for them. For those interested, brain donation is a way families…
Read MoreCase Report Discusses Symptoms and Diagnosis of Progressive Supranuclear Palsy
A case report published earlier this year in the journal Radiology Case Reports discusses the symptoms and features of progressive supranuclear palsy (PSP) and explores different ways to diagnose it. PSP falls within a category of FTD disorders that primarily affect movement, with some symptoms of the disease resembling those seen in Parkinson’s disease. Like…
Read More3rd Annual Dustin Snyder Birthday Bash Charity Golf Outing
Todd Hartzog and friends are hosting the 3rd Annual Dustin Snyder Memorial Golf Outing on June 9, 2024, at the Colonial Oaks Golf Course in Fort Wayne, IN. The event is in memory of Todd’s friend, Dustin, who lived with FTD. Festivities start at 9:00 am with a shotgun start, followed by a post-golf luncheon.…
Read MoreAt the Heart of Caring: A Caregiver’s Journal
Written by Katherine Long and Lindsay Feinberg in memory of Lindsay’s father, Andrew Feinberg, At the Heart of Caring: A Caregiver’s Journal prompts the reader with daily activities to establish self-care habits. Caregivers and Care partners can build their toolset to encourage reflection, honor their experiences, and express themselves in this handy journal. Starting April 17,…
Read MorePerspectives in FTD Research Webinar: Navigating Social and Legal Challenges in Familial FTD
Prof. Jalayne Arias, a researcher focused on policy, ethics, and law, and genetic counselor Laynie Dratch join this Perspectives in FTD Research Webinar to discuss important considerations for families impacted by familial FTD. They highlight some of the sociolegal challenges these families can face, and explain the protections provided by federal laws like the Genetic Information…
Read MoreAdvancing Hope: AFTD and Registry Staff attend Neurology Meeting
AFTD partnered with the FTD Disorders Registry to attend the annual American Academy of Neurology meeting April 13-18 in Denver. Will Reiter, Ray Frattone, and Shana Dodge from AFTD joined Carrie Milliard from the FTD Disorders Registry to exhibit and share information about FTD and how both organizations can be a resource for people impacted…
Read MoreThe Lived Experience of FTD: Frustrations of FTD
The following column was written by members of the Persons with FTD Advisory Council. Members of the Council work to share the insights of persons diagnosed to help guide AFTD on its mission for a future free of FTD. FTD can be incredibly challenging for both individuals with the condition and their loved ones. Some common…
Read MoreFTD Advocate Discusses Isolation and Housing Concerns Faced by Family Care Partners
In a column published by the digital periodical Next Avenue, FTD advocate Aisha Adkins, MPA, CNP, discusses how care partners and people living with conditions like FTD often face overlapping hardships from loneliness and housing insecurity. The financial impact of having a loved one diagnosed with a condition like cancer or dementia can put a…
Read MoreFirst Participant Treated in AviadoBio Phase 1/2 Clinical Trial for FTD-GRN Gene Therapy
AviadoBio announced on April 15 that the first participant has been treated in its Phase 1/2 ASPIRE-FTD trial evaluating the gene therapy AVB-101 as an intervention for FTD-GRN. “There is a critical need for new treatments for people living with FTD-GRN,” said AviadoBio chief medical officer David Cooper, MD. “The lack of effective disease-modifying treatments…
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