Frontotemporal Degeneration (FTD): Symptoms, Diagnosis, Responses, Outcomes, Family Stories
AFTD Volunteers Bruce Lipman and Erica Heffernan will be hosting an informational session at the Evanston Public Library on July 2 from 6-7:30 PM, CDT to offer powerful, personal perspectives on FTD. During this session, Bruce will share his insights as a care partner and support group volunteer, while Erica will discuss her experiences as…
Read MoreAFTD Volunteer Speaks about Trading Career for New “Vocation” as Caregiver
Alma Valencia, an AFTD volunteer in California, shared the challenges, stresses, and “moments of joy” she experiences as her mother’s caregiver in an as-told-to essay published recently in Business Insider. Valencia says she relished her career as a technical designer in the fashion industry, but she stepped away in 2020 to care for her mother,…
Read MoreTransposon Therapeutics Receives Fast Track Designation for PSP Treatment
Biotechnology company Transposon Therapeutics announced on May 21 that it has received Fast Track designation from the U.S. Food and Drug Administration (FDA) for an intervention developed to treat progressive supranuclear palsy (PSP), an FTD disorder that primarily affects movement. The designation was granted to TPN-101, an orally administered drug that targets LINE-1, a virus-like…
Read MoreBiomarkers Consortium Letter of Intent to Qualify FTD Biomarker accepted by FDA
The Foundation for the National Institutes of Health (FNIH) Biomarkers Consortium announced in May that the US Food and Drug Administration (FDA) has accepted its letter of intent to apply for the qualification of the protein neurofilament light (NfL) in blood as a biomarker for the early detection of approaching symptom onset in genetic FTD.…
Read MoreJune 24, 2024: VA Caregiver Support Annual Summit
AFTD staff will have an information table during the annual summit of the VA New Jersey Health Care System in East Orange. The event, which this year is titled “Beyond the Caregiving Role: Seeing the ‘Whole’ Caregiver,” will be held in the third floor auditorium in the East Orange VA Medical Center on June 24,…
Read MoreVA Caregiver Support Annual Summit
AFTD staff will have an information table during the annual summit of the VA New Jersey Health Care System in East Orange. The event, which this year is titled “Beyond the Caregiving Role: Seeing the ‘Whole’ Caregiver,” is held in the third floor auditorium in the East Orange VA Medical Center.
Read MoreAprinoia Therapeutics Receives Fast Track Designation for PET Tracer for PSP Diagnosis
Biopharmaceutical company Aprionoia Therapeutics announced that it has received an FDA Fast Track Designation for an imaging tracer used to diagnose progressive supranuclear palsy (PSP), an FTD disorder that primarily affects movement. Aprinoia is evaluating the safety and efficacy of APN-1607, a PET tracer that can visualize two types of tau protein that contribute to…
Read MoreDear HelpLine – Support for Young Adults
Dear HelpLine, My mom was diagnosed with FTD and I’m looking to connect with other young adults caring for a parent with FTD. Without support, I am overwhelmed and feel alone. Do you have any suggestions? Because FTD often occurs at a younger age, young adults in the family regularly find themselves becoming a primary…
Read MoreAdvancing 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…
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