Nation’s Leading Frontotemporal Dementia-Focused Organization Receives $600,000 Gift For Vital Research And Family Support

Open Hand Foundation raised the funds through internet donations in an effort to find a cure for frontotemporal dementia (FTD)

King of Prussia, Pa., Dec. 04, 2023 (GLOBE NEWSWIRE) -- The Association for Frontotemporal Degeneration (AFTD), the nation’s leading nonprofit organization helping families affected by frontotemporal degeneration, today announced that it has received a $600,000 gift from the Open Hand Foundation, which is committed to finding a cure for FTD. Received on Wednesday, November 29th, this gift will trigger matching funds for a drug discovery initiative, resulting in $200,000 in additional support for FTD research.

This generous charitable donation will help to accelerate AFTD efforts in research and drug discovery. A portion of the gift will also be dedicated to a small grants program to empower  people whose lives have been affected by FTD, an underdiagnosed form of young onset dementia that strikes more than 60,000 people each year. Such grants offset up to $500 in costs related to FTD and can, in turn, make participation in research toward treatments and a cure more accessible for families.

“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 Susan Dickinson, AFTD’s CEO. “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.” 

"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."

Kaaren was diagnosed with FTD in 2003. 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.

The fully restricted donation will support three AFTD-led efforts:

  • $100,000 for Drug Discovery Research: The Accelerating Drug Discovery collaboration with the Alzheimer’s Drug Discovery Foundation, which seeks to advance and support innovative small molecule and biologic drug discovery programs for FTD. This vital program focuses both on finding ways to slow the progress of FTD, and on managing challenging symptoms of this disease. This gift’s $100,000 investment in drug discovery will be matched 2:1 by the Alzheimer’s Drug Discovery Foundation.
  • $200,000 for Pilot Grants: Seed funding will go toward novel research in neurobiological mechanisms underlying FTD, and models for improving the well-being of persons diagnosed, families, and caregivers and to improve access to equitable, high-quality diagnosis, care, support, and research participation options.
  • $250,000 for Comstock Grants to Individuals and Families: The Comstock Grant Program provides hundreds of individuals and families with small grants of up to $500. The Open Hand Foundation support will ensure 500 or more such awards go toward supporting caregiver respite, quality of life, and travel to FTD educational conferences.
  • $50,000 for staff management of these programs: A small percentage of funding will go toward staff managing these key programs, ensuring the sustainability of vital FTD initiatives.

To learn more about AFTD and its work, go to 

About AFTD
AFTD is the leading organization focused on helping people and families impacted by FTD, and driving research for a cure. Our organization is committed to facilitating FTD-focused research that can hold the key to ensuring more accurate diagnosis, prevention, treatments, and a cure for dementia and related neurodegenerative diseases.

About Open Hand Foundation
The Open Hand Foundation was founded to honor the memory of Kaaren Khalil, with a mission to provide much needed funding and resources toward research to find a cure for frontotemporal dementia (FTD). The organization creates events, experiences, and opportunities for giving with its partner organizations. Uniting these efforts is a single-minded focus: Helping to end FTD.


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