AFTD is pleased to announce that we have received a gift of $600,000 from the Open Hand Foundation to further its mission to hasten a cure for FTD and improve the quality of life of those currently living with the disease.

The fully restricted donation, received by AFTD on Wednesday, November 29, will provide funding for AFTD initiatives that further FTD science, and provide support to families with FTD in their lives. The gift will contribute $200,000 to the AFTD Pilot Grant program, which funds innovative research into FTD’s causes as well as ways to improve the well-being of FTD families and allow them to more easily access high-quality diagnosis, care, and support.

The gift allots $100,000 to the Accelerating Drug Discovery for FTD program, a partnership between AFTD and the Alzheimer’s Drug Discovery Foundation (ADDF). The program advances and supports innovative small molecule and biologic drug discovery programs for FTD research. Open Hand’s $100,000 donation will be matched 2:1 by ADDF.

A total of $250,000 from the Open Hand Foundation’s gift will be used toward funding AFTD’s Comstock Grant Program. Comstock Grants are small grants of up to $500 given to families living with FTD to support caregiver respite, quality of life, and travel to FTD educational conferences.

The remaining $50,000 of Open Hand’s donation will go toward staff management of these programs.

“This contribution is a tribute to the memory of my wife, Kaaren Reid Khalil, who battled frontotemporal degeneration for over 14 years,” said Charles Khalil, founder of the Open Hand Foundation. “We are honored to preserve her legacy by supporting continued research on this devastating disease. The Open Hand Foundation is committed to making a meaningful impact, and we believe this donation will contribute significantly to the fight against FTD.”

Funds for the Open Hand Foundation’s gift to AFTD were raised from individual donations during online fundraisers organized by Charles and Kaaren’s son, Jirard Khalil, who is widely known within the gaming community as The Completionist.

“We are grateful to the Open Hand Foundation for its commitment to advancing research into FTD, a disease that is devastating for too many families,” said AFTD CEO Susan Dickinson. “Our organization is ideally positioned to ensure that this generous gift directly benefits families affected by FTD – and brings closer a future with treatments, a cure, and even prevention of this disease for generations to come.”