SAN ANTONIO – “Hope is really all we can dream of when it comes to such a terrible disease. Hope is what keeps us looking to tomorrow, to the next day,” said ALS patient and advocate Juan Reyes.
Reyes said he felt a surge of hope when he heard about the single largest donation the ALS Association has ever received, at $58 million.
The historical gift was from late philanthropist Hugh Hoffman who passed away in March of 2023 at 92 years old.
Hoffman lost his father to ALS, and at the end of his life, he wanted to ensure other families don’t lose their loved ones.
“It’s making changes directly for patients and their families,” said Juan’s wife Meg Reyes.
Juan and Meg are well-known advocates for ALS research, treatment and support. They travel the nation making sure the voices of ALS patients and families are heard.
Meg said she is thrilled that there is already a structured breakdown of what this money will be used for.
The $58 million will be allocated to three of Hoffman’s current programs over the next ten years.
The first recipient is the Clinical Trial Awards Program which is helping develop new and improved therapies by supporting early-stage clinical trials. This money will help fund two to three additional ALS clinical trials per year over ten years — a total of 20-30 trials.
“The trials are great to give money, but the protocols for the trials are also very difficult. So with Juan, he’s not eligible for a lot of the protocols because it’s within two years of diagnosis or there’s an age limit,” Meg said.
While she is relieved there will be more trials for so many other families, she also is hoping to see a wider set of eligibility options.
The second round of funding goes to the Clinic Development Program. This program helps create new ALS Certified or Recognized Treatment Centers and also elevates existing clinics to Certified or Recognized Treatment Center status. The program is expected to develop eight brand-new clinics and significantly elevate the services of four existing clinics over 10 years.
“Many of the clinics survive off grant funding and federal funding. So this will alleviate some of those concerns for clinics that are trying to stay afloat,” Juan said.
The third program is the Patient Care Expansion Awards Program which 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 10 years, 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.
Juan Reyes, an Air Force veteran, said the VA has robust disability support for ALS patients. They are grateful to be at the top of the list to receive extensive coverage of treatment and accommodations.
“Unless you are a veteran that is diagnosed with ALS, your finances are very limited in what you can do because it’s expensive to modify your house, it’s expensive to buy certain hospital equipment that may or may not be covered. There’s a van or a transportation vehicle that you need, they’re close to $75,000 or $100,000. So those grants help people be able to afford a different lifestyle and a quality of life,” Meg Reyes said.
Juan and Meg Reyes are also grateful to see the cause getting more and more attention as the years roll by.
It’s donations and news like this that offer families solace and hope that their dream of an ALS cure may someday come true.