The Vanishing Family

07/19/2026

If you are part of a MAPT family and in the U.S., please sign up to participate in the ALLFTD study

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

04/09/2026

Pre-order now. Available end of September, 2026.

https://www.instagram.com/p/DV1DBF8FQFm/?igsh=MWh5bXJ1OWZzcmY1Yw==

03/14/2026

Cure MAPT FTD Cure MAPT FTD

Medicaid is changing, and rare disease patients and families need to be prepared. Starting January 2027, some recipients may need to show work, school or volunteer hours to maintain coverage.

Join NORD's webinar where we’ll cover:
✅ How these rules will be rolled out
✅ Our advocacy to ensure uninterrupted access to care
✅ How you can make your voice heard in your state

Don’t navigate this alone. Together we can protect healthcare access for rare patients. Register for the webinar here: https://bit.ly/4daFpFi

12/03/2025

Every dollar donated to Cure MAPT FTD in December is matched one-for-one, up to $15,000. Join the movement today and double your impact.

11/30/2025

💙 This Giving Tuesday, Help Free Families from Genetic FTD

This Giving Tuesday, your gift fuels advocacy and research to stop FTD in its tracks — enabling families to live without this terminal disease haunting generations to come.

Our goal is to raise $50,000 this giving season to help advance Cure MAPT FTD’s critical priorities, namely, to:

- Advocate for MAPT FTD patient access to promising clinical trials
- Expand meaningful connections to the MAPT FTD patient and research community
- Educate families about the importance of genetic testing
- Establish a MAPT-specific registry to help accelerate research
- Share patient and family stories globally to build crucial awareness of MAPT FTD

💙 Donate today to help free families from genetic FTD. And for every dollar given, $1 will be matched, up to $15,000.

🧠 Together, we can break the chains of genetic disease and bring hope where it’s needed most.