Landmark $20MM Donation Fuels AFTD's Work Targeting FTD, Most Common Dementia under 60

Gift, the largest in AFTD's history, establishes The Donald and Susan Newhouse Fund

March 12, 2021 10:07 AM EST

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KING OF PRUSSIA, Pa., March 12, 2021 /PRNewswire/ -- The Association for Frontotemporal Degeneration (AFTD) is grateful to announce the creation of The Donald and Susan Newhouse Fund at AFTD. The Fund has been launched through a generous $20 million donation from AFTD donor and passionate volunteer Donald E. Newhouse.

Mr. Newhouse's $20MM gift, the largest single donation in AFTD's nearly two-decade history, will accelerate and deepen the organization's work across our mission areas of research, support, education, awareness, and advocacy. The gift is unrestricted, and will be allocated after planning by Board and staff.

AFTD was launched in 2002 when a single volunteer and donor, Helen-Ann Comstock, committed $1,000 of her personal funds and gathered others who had faced a journey with frontotemporal degeneration (FTD). Today, AFTD is the leading organization dedicated to improving the lives of people and families affected by FTD – the most common form of dementia under 60 – and driving research for a cure.

"To face an FTD journey is to fervently wish that no one should ever face one again," said AFTD Board Chair David Pfeifer. "Don's generous gift reflects the urgency of a community of thousands of donors and volunteers unwilling to accept the fundamental lack of treatments for FTD today."

"My wife Sue and my brother Si suffered from dementias which were variants of frontotemporal degeneration," said Donald Newhouse. "As my Suzy would have wanted, I have committed myself to do what I can, so that others do not suffer as she did. AFTD proved to be the most effective vehicle for carrying out my commitment, and my collaboration with this organization is a labor of love."

The establishment of The Donald and Susan Newhouse Fund empowers AFTD's Board and staff to deepen and broaden the vision of our current strategic plan. The plan seeks to:

  • Advance early and accurate diagnosis and the development of treatments.
  • Advance quality care and support.
  • Strengthen and expand AFTD's position as the leading authority on FTD.
  • Build and strengthen the organization for long-term success.

Since 2016, AFTD has expanded its staffing and its impact significantly, through engagement from thousands of individual donors, alongside corporate sponsors and foundation support. The newly announced Donald and Susan Newhouse Fund amplifies and builds on support provided through the David Geffen Fund at AFTD, our annual Hope Rising Benefit, and commitments from thousands of donors and volunteers who lead a range of grassroots events across the country.

"Don's gift provides critical momentum as AFTD prepares for our next strategic planning process, to begin this summer," said AFTD CEO Susan L-J Dickinson, MSGC. "We're grateful for his determination, vision, and partnership," she added. "During a challenging time for the families we serve, this gift sends a powerful message: By working together, we can end this disease. We're deeply thankful for the support of the Newhouse family, and of all who choose to work with us in seeking a world with compassionate care, effective support, and a future free of FTD."

About FTD: FTD brings progressive changes in behavior, personality, language, and/or movement. Today, there are no disease-modifying treatments, and there is no way to prevent or cure this disease. On average, even receiving an accurate diagnosis takes 3.6 years. Advancing research into FTD is likely to have benefit for ALS, Alzheimer's, and other forms of neurodegenerative disease, and we welcome partnership and support from others looking to making a difference in the lives of the more than 60,000 in the U.S. alone who are affected by FTD.

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SOURCE The Association for Frontotemporal Degeneration

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