Open Hand Foundation Donates $600,000 to the Association for Frontotemporal Degeneration to Boost FTD Research and Support Families

association for frontotemporal degeneration

KING OF PRUSSIA, PA — The Association for Frontotemporal Degeneration (AFTD) announced that it has received a generous donation of $600,000 from the Open Hand Foundation. This significant gift, received on November 29th, will not only bolster research into frontotemporal degeneration (FTD), but also activate additional matching funds for a drug discovery initiative, bringing an extra $200,000 to the fight against this devastating disease.

The AFTD, a leading nonprofit organization focused on helping families affected by FTD, will use this donation to accelerate research and drug discovery efforts. A portion of the funds will also support a small grants program, offering financial relief to individuals and families grappling with FTD, a form of young-onset dementia affecting over 60,000 people annually.

Susan Dickinson, AFTD’s CEO, expressed her gratitude to the Open Hand Foundation for their commitment to advancing FTD research. She stressed how crucial this donation is in ensuring direct aid to those affected by FTD and moving closer to a future where treatments, a cure, and even prevention of this disease are possible.

The Open Hand Foundation’s founder, Charles Khalil, shared that the donation is a tribute to his late wife, Kaaren Reid Khalil, who battled FTD for more than 14 years. He expressed hope that this contribution would significantly contribute to ongoing research into this devastating illness.

The funds for the donation were raised through online fundraisers organized by Charles and Kaaren’s son, Jirard Khalil, a well-known figure in the gaming community known as The Completionist.

The donation will support three key AFTD initiatives:

  • $100,000 will go towards Drug Discovery Research, in collaboration with the Alzheimer’s Drug Discovery Foundation, to advance innovative drug discovery programs for FTD.
  • $200,000 will be allocated for Pilot Grants to fund novel research into the neurobiological mechanisms underlying FTD and models for improving the well-being of diagnosed persons, families, and caregivers.
  • $250,000 will fund Comstock Grants to Individuals and Families, providing small grants of up to $500 to hundreds of individuals and families, supporting caregiver respite, quality of life, and travel to FTD educational conferences.
  • $50,000 will support staff management of these programs, ensuring the sustainability of vital FTD initiatives.
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This generous gift from the Open Hand Foundation marks a significant step forward in the battle against FTD, potentially transforming the lives of thousands affected by this underdiagnosed form of dementia.

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