louiseoconnor-31“I encourage anyone who has been affected by FTD to tell their stories. Telling your story and sharing your experiences with your elected officials is something anyone can do. Most politicians want to help but don’t understand FTD and the challenges the different symptoms and earlier age of diagnosis pose to people with the disease and their families and loved-ones. Popkin Shenian, AFTD board member, Paoli PA.

Accomplishing AFTD’s Mission requires advocacy – speaking out about patients’ and families’ needs, hopes and successes. Contact AFTD at for help finding opportunities to share your story and educate politicians and policy makers to improve services and resources for patients and families, and intensify the research needed to find treatments and a cure.

Current Initiatives

You will find more information at the link above about AFTD’s new and on-going efforts to ensure that the needs of people confronting FTD are included in state and federal healthcare programs and policy initiatives to improve care and advance research to treat and cure degenerative neurological disease.

Tools and Resources

Check the link above for help finding and contacting your elected representatives to advocate on your own behalf for more resources, improved services and increased funding for medical research. As AFTD’s involvement in state and federal advocacy increases additional material and more information will be available at this page.