Former U.S. Rep. Wexton, Living with PSP, Featured in “Brain & Life” Magazine
Jennifer Wexton, a former member of Congress who stepped down after revealing her progressive supranuclear palsy (PSP) diagnosis, was featured on the cover of the April/May issue of Brain & Life magazine, the official publication of the American Academy of Neurology. The article highlights her use of a device that “speaks” with an artificial intelligence–generated…
Read MoreDear HelpLine: The GUIDE Model and FTD
Dear HelpLine, My neurologist’s office recently told me about something called GUIDE, for people with dementia. I’m wondering if this program could help with FTD. Where can I learn more? GUIDE, which stands for Guiding an Improved Dementia Experience, is a new model of dementia care for Medicare beneficiaries. Programs under the GUIDE model provide…
Read MoreGenetic FTD Advocate Linde Jacobs Profiled in CBS Minnesota Segment
Linde Jacobs, a Minnesota nurse who has devoted herself to genetic-FTD advocacy after learning that she and her sisters share the same MAPT mutation that caused her mother’s FTD, was profiled by the CBS affiliate in Minneapolis on June 2. At just 50, Jacobs’ mother Allison began displaying some of the hallmark symptoms of behavioral…
Read MoreMillennial Whose Father Has PSP Explains the Challenges Faced by Millennial Caregivers
When Jennifer N. Levin’s father was diagnosed with progressive supranuclear palsy, she was only 32 and living across the country, working long hours at her job in the television industry. Nevertheless, as an only child with her father long divorced, she became his long-distance caregiver. “I was at an age where I was still building…
Read MoreAFTD Ambassador Shares Husband’s FTD Journey with West Virginia Newspaper
In a May 21 article published in the Charleston Gazette-Mail, AFTD Ambassador Debbie Elkins detailed her family’s FTD journey following the diagnosis of her husband, Chuck. She recounted the first indications that something might be wrong with Chuck, a high school basketball coach and teacher in West Virginia for 41 years and a well-loved member…
Read MoreAFTD Medical Advisor Emeritus Virginia Lee Elected to National Academy of Sciences
Virginia M.-Y. Lee, PhD, an emeritus member of the AFTD Medical Advisory Council (MAC) and the current director of the University of Pennsylvania’s Center for Neurodegenerative Disease Research, was elected to the National Academy of Sciences (NAS) on April 29. Dr. Lee joins more than 2,600 other active NAS members, who are tasked with providing…
Read MorePartners in FTD Care – A Lack of Empathy and Emotional Connection: A Common Symptom of FTD
Providing care for someone living with a condition as complex as FTD poses physical and mental challenges to both professional and family caregivers. In many cases, maintaining a fond emotional connection with the person diagnosed can offer small moments of joy, lightening the strain and stress of caregiving with spontaneous shared smiles, laughter, or hugs.…
Read MoreAFTD Healthcare Professional Webinar: Speech Language Therapy — A Promising Practice in FTD Treatment and Care
When patients lose the ability to communicate effectively, doctors and other clinicians often refer them to a speech language pathologist (SLP) to help them regain their speaking skills. But for patients with the FTD disorder known as primary progressive aphasia (PPA), lost speaking abilities do not return, and communication only gets worse as the brain…
Read MoreEmma Heming Willis Honored with Caregiving Award
Emma Heming Willis was recently honored by Maria Shriver’s Women’s Alzheimer’s Movement (WAM) at Cleveland Clinic, receiving the organization’s Caregiving Award for her “outstanding work in advocating for unpaid family caregivers.” The awards were part of an educational and advocacy luncheon in Las Vegas, held May 19, to raise awareness for two critical women’s health…
Read MoreSession Videos from AFTD’s 2025 Education Conference Now Available
Sessions from AFTD’s 2025 Education Conference are now available on our YouTube channel. Whether you missed a session, you weren’t able to join us live in Denver or virtually, or you simply want to catch up on the latest updates from the community, you are sure to find a session that meets your interests and…
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