Advancing Hope: AFTD Joins National Institutes of Health AMP ALS Initiative as Partner
AFTD is joining fellow nonprofits, biopharmaceutical companies, and the U.S. Food and Drug Administration (FDA) as partners in the Accelerating Medicines Partnership for ALS (AMP ALS) initiative. AFTD’s participation in the initiative was made possible thanks to the support of David and Weezie Reese. The 2011 discovery that mutations of the gene c9orf72 can cause…
Read MoreNew York FTD Registry Bill Passes State Senate
A bill establishing a registry of FTD diagnoses in New York State unanimously passed the state Senate on June 5. Sponsored by Sen. Michelle Hinchey, Senate Bill 7874 requires healthcare providers in New York to report diagnoses of FTD to a registry run by the state Department of Health (DOH). The bill also establishes an…
Read MoreAFTD Board Member Kristin Holloway Tells Her FTD Story to Self Magazine
AFTD Board member Kristin Holloway shared her experiences as a care partner for her husband, Lee, in an article published by Self magazine on May 17. Holloway began noticing alarming changes to Lee’s behavior in May 2016, when he was in his mid-30s. He regularly arrived late, or not at all, to his job at…
Read MoreJuly 15, 2024: Virtual Meet & Greet for Pittsburgh, Pa. Area
Join and learn from others who understand the FTD journey at this virtual AFTD Meet & Greet event for people in the Pittsburgh, Pa. area on Monday, July 15, beginning at 6:30 p.m. RSVP by emailing event host Janet Freburger at janet.freburger@gmail.com. You can also download this flyer to learn more.
Read MorePittsburgh, Pa. Virtual Meet & Greet
Join and learn from others who understand the FTD journey at this virtual AFTD Meet & Greet event for people in the Pittsburgh, Pa. area on Monday, July 15. RSVP by emailing event host Janet Freburger at janet.freburger@gmail.com. You can also download this flyer to learn more.
Read MoreAFTD Staff and Emma Heming Willis Commemorate FTD Week Resolution in Calif.
(pictured above, L-R: FTD advocate Wanda Smith, Calif. Assemblymember Brian Maienschein, AFTD CEO Susan L-J Dickinson, FTD advocate Emma Heming Willis, Calif. State Sen. Brian Jones) AFTD staff traveled to Sacramento to join Emma Heming Willis, Wanda Smith, and other FTD advocates at the State Capitol on May 30 to commemorate the adoption of a…
Read MoreSession Videos Now Available from AFTD 2024 Education Conference
Videos from the AFTD 2024 Education Conference are now available on AFTD’s YouTube channel. Whether you were unable to join us in Houston or online, or simply want to watch a presentation you missed, you can now watch a range of sessions highlighting the lived experience of FTD, the latest updates on research, and other important…
Read MoreCalifornia’s First Frontotemporal Degeneration Awareness Resolution Passed at State Capitol by Assembly and Senate
Emma Heming Willis Joins The Association for Frontotemporal Degeneration at California’s Capitol to Mark Watershed Moment in Dementia Awareness SACRAMENTO, CA. – On Thursday, The Association for Frontotemporal Degeneration (AFTD) and Emma Heming Willis, wife of actor Bruce Willis, joined state lawmakers to mark California’s first resolution in support of Frontotemporal Degeneration Awareness (FTD) Week.…
Read MorePassage Bio Highlights Promising Clinical Trial Progress in Quarterly Update
Biopharmaceutical company Passage Bio highlighted promising progress in its phase 1/2 clinical trial for a form of genetic FTD in a recent quarterly update. Passage Bio’s upliFT-D trial is evaluating PBFT02, an experimental gene therapy for FTD caused by mutated variants of the GRN gene that can create an inability to produce the protein progranulin,…
Read MoreFTD & ALS: A Collaborative Approach to Diagnosis and Care
We know of several genes that can cause hereditary FTD, ALS, and ALS with FTD, with C9orf72 the most common. Yet genetics is not the complete story, as these conditions can appear without a known genetic cause. In this AFTD Healthcare Professional Webinar, neurologists from Massachusetts General Hospital who specialize in FTD and ALS will…
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