Clinical trial volunteers are an essential part of the medical research done to find treatments and cures. By participating in a study, you could contribute to the discovery of a treatments or cure for frontotemporal dementia while receiving personal and specialized medical attention from our clinical staff. If you change your mind, you are always free a study at any time without penalty.

By becoming an advocate for frontotemporal dementia and caregivers, you can directly improve the care of your loved one. Believe in yourself as a caregiver, protect your health, ask for help and speak up for your rights. Reading the pages on this website is the first step to getting informed and gaining confidence. As your confidence grows and you learn to recognize your strengths and weaknesses as a caregiver, you will improve at asking for help from family, the workplace, friends and others. In turn, these skills will improve your caregiving.

Activists are people who come together to enable change and a future without frontotemporal dementia. FTD activists call for advancements in federal research funding, growth in state-supported services, support for caregivers and improvements in the quality of care for people with prion disease. Specific changes have been made by caregivers asking for family medical leave, funding caregiver respite breaks, Medicare and Medicaid coverage, medical education programs and support for research.

• Join the advocacy campaign launched by the Association for Frontotemporal Dementias (AFTD). They are looking for your help in educating our legislators and lawmakers about the unique issues FTD families face.
• Follow the legislation that Congress is working on at thomas.loc.gov, Caregiving PolicyDigest, GovTrack.us or Official California Legislative Information.
• Write your Senators and Representatives to tell your story and ask for funding and support for FTD programs.
• Provide input to the Alzheimer's Study Group, a task force developing the National Alzheimer's Strategic Plan for the US. Encourage them to include FTD in the plan.