$58 Million Donation Will Advance Promising ALS Research and ALS Patient Access to Care

February 12, 2024 (Arlington, VA) – The ALS Association proudly announces the largest single gift in its history from the estate of the late philanthropist Hugh Hoffman. The $58 million gift will profoundly impact the lives of people living with ALS and their loved ones, advancing the ALS Association’s goal of making ALS livable until there is a cure.

Hoffman’s Compassion for People Living with ALS

Hoffman was a Cincinnati native who passed away in March 2023 at the age of 91. When he was 11, Hoffman lost his father, Herbert, to ALS, which is still a fatal disease without a cure. Hoffman wanted his gift to ensure that families in the future will not have to lose their loved ones to ALS.

“Uncle Hugh hoped that his gift would provide an immediate boost of hope for people living with ALS and their families,” said Bert Bullock, one of Hoffman’s nephews. “This gift is a powerful testament to who he was and represents our family’s way of championing his legacy.”

Making ALS Livable Until There is a Cure

Hoffman’s gift is specifically designated to advancing promising ALS therapies, developing new or strengthening existing ALS clinics, and enhancing access to ALS care for people living with ALS.

“His gift is a beacon of hope for the thousands of people living with ALS and their loved ones, and all those who will be diagnosed in the future."

“We are deeply grateful to Hugh Hoffman and his family,” said ALS Association President and CEO Calaneet Balas. “His gift is a beacon of hope for the thousands of people living with ALS and their loved ones, and all those who will be diagnosed in the future. It will provide tangible impacts that advance our goal of making ALS livable until it is cured.”

Balas and her team met several times with Hoffman to gain insights into his drive and passion for curing ALS and supporting people living with ALS.

A Legacy of Unprecedented Philanthropy

Hoffman graduated from Yale University and eventually became a successful stockbroker and investment advisor. Throughout his life, and upon his death, he made several transformational donations, including to the ALS Association, the University of Cincinnati and the Cincinnati Zoo & Botanical Garden.

"His generosity speaks volumes about the sort of person he was.”

“Our Uncle Hugh was an incredibly generous, kind man of great integrity who wanted to give back,” said Steve Bullock, one of Hoffman’s nephews. “He lived a modest life, which enabled him to make truly transformative donations after his death. His generosity speaks volumes about the sort of person he was.”

A Historic Gesture of Generosity to the ALS Association

Hoffman’s $58 million gift to the ALS Association is believed to be the largest single philanthropic gift made to an ALS organization and represents just over half of the money raised by the global phenomenon known as the Ice Bucket Challenge. During the summer of 2014, the ALS Association raised $115 million from 2.5 million donors. The ALS Association used these gifts to significantly accelerate the fight against ALS, including funding the discovery of new ALS treatments, expanding ALS care, and creating several global research projects.

“We saw how the ALS Association was able to leverage the Ice Bucket Challenge donations and provide tangible impacts for people living with ALS,” said Steve Bullock. “We believe Hugh’s gift provides a giant step forward toward the ALS Association’s goal of making ALS livable for everyone, everywhere, until there is a cure.”

The Hugh and Herbert Hoffman ALS Fund

The Hugh and Herbert Hoffman ALS Fund will go toward ensuring that new treatments are being advanced, as well as improving ALS clinics and increasing patient access. It will specifically fund three programs in the areas of ALS research and care:

• The Hoffman ALS Clinical Trial Awards Program

  • This program will help to develop new and improved therapies by supporting early-stage clinical trials.
  • This program is expected to fund 2 to 3 additional ALS clinical trials per year, ultimately totaling 20 to 30 new ALS clinical trials over 10 years.

• The Hoffman ALS Clinic Development Awards Program

  • This program will support the development of new ALS Certified or Recognized Treatment Centers as well as elevate existing clinics to Certified or Recognized Treatment Center status.
  • This program is expected to develop 8 brand new clinics and significantly elevate the services of 4 existing clinics over 10 years.

• The Hoffman ALS Patient Care Expansion Awards Program

  • This program will enhance ALS patient access to multidisciplinary care by funding additional ALS clinic days, increasing access to telehealth services and reducing financial barriers to care.
  • Over a 10-year period, this program is expected to provide 60 grants to ALS clinics and 3,000 grants to individuals living with ALS who are experiencing financial barriers to accessing multidisciplinary care.

About ALS

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. On average, it takes about a year before a final ALS diagnosis is made. The disease is always fatal, usually within five years of diagnosis. There is currently no cure. 

About the ALS Association

The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at www.als.org.