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.

Lay Summary – FTD Impact Survey Analysis
In the summer of 2014 we posted the following request on our AFTD webpage:
“AFTD 2-Question Impact Survey – We need your help!
If you are a person diagnosed with FTD, or a primary caregiver/former caregiver/family member of someone with FTD, please answer this short on-line survey (2-questions) that will help AFTD advocate with public policy and healthcare providers.”

The primary objective of this survey was to learn more about the impact of FTD symptoms on daily activities of life for persons diagnosed as well as for their caregivers or family members.  We also wanted to learn more about how the disease has impacted quality of life in general for FTD families. Our plan was to summarize the responses and use this information to help us in our advocacy efforts.

Follow the link to see a summary of our Impact Survey analysis. To read the full report, and to download, please follow this link, which can also be accessed via the AFTD Research Analysis section found under the For Researchers menu tab.

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.