World FTD Awareness Week starts in less than one week — on 9/24! In the lead-up, AFTD would like to let you know about an important way you can share your perspective with federal policymakers and healthcare researchers.

On October 16-17, the National Institutes of Health (NIH) will host the first-ever National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. AFTD is proud to co-sponsor this two-day meeting along with the U.S. Department of Health and Human Services and many other private sector organizations.

You can help inform the researchers and policymakers planning the summit by sharing your experiences and the challenges you faced finding help and services. AFTD encourages you to tell your FTD story and clarify that not all dementia is Alzheimer’s.

If you choose to share your stories and experiences, simply email them to napa@hhs.gov, with “Care Summit Comment” in the Subject line. Your email will be included on the Summit Public Comments page, and shared with the Steering Committee. The organizers need to hear from people confronting FTD and other non-Alzheimer’s dementias in order for the summit to address the needs of everyone living with dementia.