RARE Daily

ALS Association Gets $58 Million Gift

February 13, 2024

Rare Daily Staff

The ALS Association said the estate of Cincinnati native and philanthropist Hugh Hoffman, who died in March 2023, made a $58 million gift to the association, the largest single gift in its history.

Hoffman at age 11 lost his father to amyotrophic lateral sclerosis (ALS), a fatal, neurodegenerative disease that is without a cure. The organization said Hoffman wanted his gift to ensure that families in the future will not have to lose their loved ones to ALS.

ALS is a progressive 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.

Hoffman’s gift will be used to advance experimental ALS therapies, develop new or strengthen existing ALS clinics, and enhance access to ALS care for people living with the condition. The Hugh and Herbert Hoffman ALS Fund will fund three programs in the areas of ALS research and care:

The Hoffman ALS Clinical Trial Awards Program will help to develop new and improved therapies by supporting early-stage clinical trials. This program is expected to fund two to three 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 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 eight new clinics and significantly elevate the services of four existing clinics over 10 years.

The Hoffman ALS Patient Care Expansion Awards 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.

“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, a nephew of Hoffman’s. “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.”

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