$20M Donation Fuels AFTD’s Work Targeting FTD: March 2021

Donald Newhouse, a volunteer with the Association for Frontotemporal Degeneration (AFTD) and owner of Advance Publications Inc., has made a $20 million donation to AFTD to fund work targeting frontotemporal degeneration (FTD), the most common form of dementia in people under the age of 60.

“My wife Sue and my brother Si suffered from dementias which were variants of frontotemporal degeneration,” said Mr. 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 donation, the largest single gift in AFTD’s history, will be used to create The Donald and Susan Newhouse Fund. It will help accelerate and deepen the organization’s work across its mission areas of research, support, education, awareness, and advocacy.

“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.”

The gift is unrestricted, and will be allocated after planning by Board and staff.

The establishment of The Donald and Susan Newhouse Fund empowers AFTD’s Board and staff to deepen and broaden the vision of its 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.

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 FTD. Today, it is the leading organization dedicated to improving the lives of people and families affected by FTD and driving research for a cure.

Since 2016, AFTD has expanded its staffing and its impact significantly, through engagement from thousands of individual donors, alongside corporate sponsors and foundation support. This new fund amplifies and builds on support provided to AFTD through the David Geffen Fund, its 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.

“During a challenging time for the families we serve, this gift sends a powerful message: By working together, we can end this disease,” she added. “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. Currently, there are no disease-modifying treatments, and there is no way to prevent or cure it. Even receiving an accurate diagnosis takes an average of 3.6 years. Advancing research into FTD is likely to also benefit ALS, Alzheimer’s, and other forms of neurodegenerative disease. Partnerships and support from others help to make a difference in the lives of the more than 60,000 people in the U.S. who have been diagnosed with FTD.