Guest Feature: That Picture, That Movie, That Song – Connecting with My Dad Beyond FTD
FTD can distort one’s personality and behavior in unpredictable and upsetting ways, and it can be hard to remember who they were. But often, the “true” self of the person diagnosed – their interests, mannerisms, quirks, and passions – remain intact, albeit deeply buried. Journalist and writer Alison McCook wrote the following essay for Help…
Read MoreAFTD Webinar: Genetic FTD — To Test or Not to Test
The decision to learn one’s own genetic risk for developing FTD is highly personal. An individual’s test results may reveal information not only about their own status, but may shed light on other family members’ risk for developing FTD. But many current FTD studies and clinical trials require participants with specific genes. Now more than…
Read MoreAFTD and Denali Therapeutics Discuss Takeda Pharmaceuticals Partnership to Develop FTD-Focused Therapeutic
Recently, members of the Denali Therapeutics team provided insights into their work and partnership with Takeda to develop a therapeutic to treat FTD-GRN (Frontotemporal Dementia caused by GRN gene mutation) and shared what inspires them to engage in neurodegenerative disease research. Could you share your company’s approach to developing an FTD-focused therapeutic? Denali is…
Read MoreStudy Evaluates the Feasibility of ALLFTD’s Mobile App to Collect FTD Diagnostic Data
A study published in the journal Alzheimer’s and Dementia evaluates whether a mobile app developed by the multi-site FTD research consortium ALLFTD can help users record and transmit scientifically acceptable diagnostic data for FTD. FTD’s symptoms can make travel to medical and research facilities difficult, especially for those who live in remote, rural areas. This…
Read MoreLiving Well with PPA
“Living Well with PPA” is a six-week online support program designed to provide a safe space so that people newly diagnosed with primary progressive aphasia can cope with their diagnosis together. Each interactive one-hour session will provide an outlet to learn and find support with others in the same situation. Participants will: Learn more about…
Read MoreSTAT Article Explores the Connection Between FTD and Visual Creativity
An article published by STAT explores the connection between the onset of FTD and a spike in visual creativity that a small percentage of people with the disease experience. The article introduces Carol Spence, a woman diagnosed with FTD who experienced a surge in creativity as the disease progressed. Already a talented crafter who made…
Read MoreAdvocacy Update: AFTD Ambassadors Offer Insights at July NAPA Meeting
At the most recent meeting of the National Alzheimer’s Project Act (NAPA) Advisory Council, AFTD Ambassadors Katie Zenger and Terry Walter shared their experiences to help educate federal officials on the needs and concerns of people affected by FTD. NAPA was passed in 2011 to address the needs of families affected by dementia and to bring coordination and focus…
Read MoreRecent CBS Report Discusses Link between FTD and Creativity with Dr. Bruce Miller
A report recently aired by KPIX in San Francisco highlights the spike in creativity that has been observed in a small percentage of people with FTD. Bruce Miller, MD, of the University of California, San Francisco, and playwright Jake Broder, creator of the play UnRavelled, shared insights into the phenomenon with reporters. For over two…
Read MoreAFTD Educational Webinar — Genetic FTD: To Test or Not to Test
Tuesday, August 15 3 – 4 p.m. ET The decision to learn one’s own genetic risk for developing FTD is highly personal. An individual’s test results may reveal information not only about their own status, but may shed light on other family members’ risk for developing FTD. But many current FTD studies and clinical trials…
Read MoreAFTD Educational Webinar — Genetic FTD: To Test or Not to Test
The decision to learn one’s own genetic risk for developing FTD is highly personal. An individual’s test results may reveal information not only about their own status, but may shed light on other family members’ risk for developing FTD. But many current FTD studies and clinical trials require participants with specific genes. Now more than…
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