On May 7, I lost my dad to ALS, two years after his diagnosis.

Amyotrophic lateral sclerosis is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing progressive loss of motor function. It can advance in many ways. For my dad, it started in his right hand, eventually robbing him of his ability to walk and forcing him to undergo a tracheotomy to breathe. There is no cure, and treatments are often only accessible through clinical trials at major hospitals, Mass General in his case.

After his diagnosis in 2023, I decided to channel my grief and anger, creating Plunge for the Funds, a fundraiser supporting the Patient Assistance Fund at the ALS Clinic at MaineHealth Mid Coast Hospital in Brunswick. It is the only clinic of its kind in the state, located at the very hospital to which my dad dedicated three decades of his career. The clinic operates monthly, connecting patients to various providers, services, equipment and both emotional and physical support for themselves and their caregivers.

In 2024, we raised $33,000 at the Plunge. On May 17 of this year, we raised another $51,000. The clinic is a 501(c)(3) and depends on donations to support patients from around the state. Their staff is incredible and are constantly fighting for more funding, more support. My family and I have seen the impact of the clinic firsthand, and we want all ALS patients in Maine to have access to everything it provides.

But none of that money is going to ALS research. And the Trump administration is proposing drastic cuts to the National Institutes of Health (NIH) in its new budget.

The NIH is responsible for driving scientific discovery into diseases like ALS. While every dollar we raised helps local patients live with dignity, it’s federally funded research that offers real hope for new treatments and, one day, a cure. Eliminating that funding now doesn’t just stall progress, it abandons families who are clinging to the next breakthrough, or simply more time.

The ALS research community is closer than ever to meaningful advances. Clinical trials are fueled by bipartisan support, private donations and relentless advocacy. But trials require stable, predictable funding. If this budget passes, we won’t just lose funding. We’ll lose momentum. We’ll lose patients who might have lived long enough to see the next promising treatment. And we’ll have to reckon with the fact that politics control funding for research into rare and complex diseases.

We can and must do better. Congress must reject any budget that dismantles lifesaving research in the name of politics. ALS patients don’t have time for political games. They need answers. They need hope. They need a country that believes their lives are worth the investment.

Please, contact your representatives. Remind them that defunding the NIH is neither morally justifiable nor politically smart.