Donate Now

Your gift means so much. Click here to make a donation to AFTD today. 

Updated Resource for Healthcare Professionals and Caregivers

Prometheus Books has just released the Third Edition of What If It's Not Alzheimer's? A Caregiver's Guide to Dementia.  Edited by

This expanded edition includes chapters authored by experts from across the US and around the world in medicine, nursing, occupational and physical therapy, community services, hospice, respite, grief and legal and financial issues. In addition to providing current medical information (in lay language) the book is a practical guide to managing the team of medical experts, managing daily care and tending to a caregiver's own needs. 

What If It's Not Alzheimers? can be ordered online or found in some bookstores. List price is $19.00. 

NIH Grants Create Two Rare Disease Consortia for FTD!

Breaking news - NIH has just announced major grant awards to create 22 clinical research networks, each dedicated to a group of related rare diseases. And two of these networks will address FTD!

The FTLD Clinical Research Consortium will be led by Adam Boxer, M.D., Ph.D., (left) and Howie Rosen, M.D.  Margaret Sutherland, Ph.D., will serve as NIH Program Officer for the Consortium.

The first, titled The FTLD Clinical Research Network, will be led by Adam Boxer, M.D., Ph.D., and Howie Rosen, M.D., at the University of California, San Francisco. They will be leading a network of 13 clinical institutions across the US and Canada, each led by a recognized leader in FTD. By linking these clinical centers the network will accrue a large number of patients to drive forward research on such critical issues as development of biomarkers to accurately diagnose FTD and track disease progression. The overarching goal is to build a reliable clinical network to support treatment and prevention clinical trials for FTD. The network will include a central data repository and a DNA bank.

A second grant was awarded to a group of clinicians led by Michael Benatar, MD, at Miami University. This CREATE Consortium (Clinical Research in ALS and related disorders for Therapeutic Development Consortium) will study many of the same issues in ALS and related disorders, including the FTD/ALS syndrome caused by mutations in the C9 gene.

AFTD is a patient advocacy group partner on both of these consortia and will sit on the Advisory Board for both projects. Watch the AFTD website for more information as these important new projects get up and running!

New York City Marathon -

Ben and his father

Ben Austin will run the New York City Marathon on November 2nd in memory of his father, who passed away from FTD with ALS in 2009. Ben has been hard at work training and raising money for AFTD and has already raised over $10,000! To cheer Ben on during his final weeks of preparation, visit his fundraising page. There, you will also find a link to a touching tribute Ben's mother penned. 

A Concert of Hope - Linda Parsons is hosting a concert at Westbrook Park United Methodist Church, 2521  12th Street NW, Canton, OH 44708, on Sunday, November 2nd. The concert will be the world premiere of "A Symphony for Douglas," composed by Linda. For more information, see the event flyer.