Frontotemporal Dementia (FTD) is the most common form of dementia for those under 60. Under-diagnosed and currently incurable, FTD can be caused by a mutated gene, including the MAPT gene. Cure MAPT FTD raises awareness of the MAPT genetic mutation causing FTD, assists a global network of MAPT families, and advocates for trials that will lead to a cure.
External link for Cure MAPT FTD
How does FTD affect positive gene carriers and their families? See our video below... #ftd #dementia
Co-Executive Director at Culinary Careers Program; Julia Child Award Director; Co-Founder Cure MAPT FTD
On #FTDAwarenessWeek, we’re asking the world to learn about frontotemporal dementia, the most common form of dementia for those under 60. #dementia #ftd #frontotemporaldegeneration https://lnkd.in/ezQfGK-C
🧠 What if it’s FTD? This #FTDAwarenessWeek, we’re asking the world to recognize the signs that often get missed. The Reality: 🌎Genetic FTD affects 1.8-4.4 people per 100,000 worldwide 💙Around 40% of all FTD cases have a strong family history, but even with NO family history, <10% could still be genetic 🧠Unlike Alzheimer’s, FTD strikes younger (40s-60s) and affects behavior, personality & language FIRST — not memory ❓Why This Matters: Behavioral variant FTD has the highest genetic likelihood (40-45%), followed by FTD-ALS (20-40%). The three main genes: C9orf72, GRN (Progranulin), and MAPT, account for most genetic cases, but there are many others being discovered. When someone seems like a “stranger to their loved ones” or loses their words before their memories, when risky behavior emerges in midlife, or when financial judgment disappears — what if it’s FTD? For families carrying genetic variants, awareness isn’t just statistics. It’s hope for earlier diagnosis, better support, and treatments that could change everything. #FTDawareness #GeneticFTD #MAPT #GRN #C9orf72 #VCP#CHMP2B #TBK1 #RareDiseaseAwareness #BrainHealth#FrontotemporalDementia #WorldFTDWeek#FTDAwarenessWeek
Calling all brain scientists--literally. The Rainwater Charitable Foundation just opened applications for the Tauopathy Challenge Workshop, "a funding program that convenes interdisciplinary experts around a single topic to address unmet needs in the primary tauopathies." #TargetOurTau #tauopathies #dementia https://lnkd.in/eHpMAZhg
Cure MAPT FTD reposted this
What if a genetic test could change your future—and fuel your purpose? That was the story Linde Lee Jacobs shared in NPR’s What’s Health Got to Do with It? episode, “Brains on the Brink: Fighting Fate and Defying Age.” As cofounder of Cure MAPT FTD, Linde reflected on her journey from caregiving to advocacy, while host Dr. Joe Sirven explored the role of genetics in neurodegenerative disease. Linde brought this powerful perspective to the international stage as a keynote speaker at the Tau Global Conference 2025 and Tau2024 Global. Listen here: https://lnkd.in/gEdWJVum
Cure MAPT FTD reposted this
Great connecting with the team from Cure MAPT FTD today! #AAIC2025
Next week, come meet us at #AAIC2025 at Booth 1729. Help us cure this terminal neurodegenerative tauopathy! #Alzheimers Alzheimer's Association® #FTD #MAPTgene
Stand up for science, and life-saving medical research for dementia, cancer and other diseases. We stand with National Institutes of Health scientists and concerned Americans by denouncing cutting and withholding critical NIH funding, stopping collaborative international studies and censoring research. Sign this NIH petition. #NIH #dementiaresearch #cancerresearch https://lnkd.in/gPQDnWF4
Join us this Friday for a Friday Families meeting! All MAPT FTD families & individuals are welcome. Our esteemed speaker Dr. Nupur Ghoshal will be discussing the Tau protein & how it relates to FTD. Time: 2:30 EST / 11:30 PST RSVP here: https://lnkd.in/eYKyE7hb
Cure MAPT FTD reposted this
Today we met with the FDA to share our stories and plea for change. We sent seven representatives - each with a unique story - including asymptomatic carriers, care partners, and family members of folks with MAPT FTD. We made several important requests to the FDA in our patient listening session, all with the goal of allowing for MAPT FTD individuals to finally get access to life-changing treatments & therapies. A publication will be announced soon with the Patient Listening Session findings, so stay tuned. Thank you to the FDA for inviting us and for hearing our stories. The MAPT FTD community is activated & willing to participate in clinical trials, it's our only hope for a future. #fda #mapt #ftd #curemaptftd
Today we met with the FDA to share our stories and plea for change. We sent seven representatives - each with a unique story - including asymptomatic carriers, care partners, and family members of folks with MAPT FTD. We made several important requests to the FDA in our patient listening session, all with the goal of allowing for MAPT FTD individuals to finally get access to life-changing treatments & therapies. A publication will be announced soon with the Patient Listening Session findings, so stay tuned. Thank you to the FDA for inviting us and for hearing our stories. The MAPT FTD community is activated & willing to participate in clinical trials, it's our only hope for a future. #fda #mapt #ftd #curemaptftd