Lou Gehrig's disease
About ALS
What took Tom — and where the science is now.
Tom's story
ALS — amyotrophic lateral sclerosis, also known as Lou Gehrig's disease — is a progressive neurodegenerative disease that destroys the motor neurons that control voluntary movement. There is no cure.
Tom's first words when told by the doctor that he indeed had ALS were, "Well, I guess when your number's up, your number's up." He struggled quietly and with dignity. The degenerative effects had a devastating depressive effect. He lasted less than a year from his diagnosis.
His mother drove at least five hours each way every other weekend to make sure he was taken care of and that he knew she loved him. His brother Roy took care of him throughout his illness and worked tirelessly without much help until our father arrived.
Tom was my twin brother. We were fraternal — not genetically identical — and I was twenty minutes older. We were close in many ways and fought like brothers usually do. There is hardly a day that passes that I don't think about him.
— Tad
"Tom said he wanted others to learn from him and his disease — that he did not want others to have to endure the same difficulties."
— from the eulogy
Where the science is now
Tom died in 2002. In the years since, the picture for ALS patients has shifted — slowly, then suddenly. Riluzole, the only approved drug at the time of Tom's diagnosis, modestly extends survival. Today there are more options:
- Edaravone (Radicava) — approved by the FDA in 2017 (IV) and 2022 (oral), it can slow the decline in physical function in early-stage patients.
- Tofersen (Qalsody) — approved by the FDA in April 2023, the first gene-targeted therapy for ALS. It treats the small subset of patients (about 2%) whose disease is caused by mutations in the SOD1 gene, lowering the toxic protein those mutations produce.
- Relyvrio (AMX0035) — approved in September 2022 and voluntarily withdrawn in April 2024 after its confirmatory Phase 3 trial failed. The ALS community still treats it as evidence the regulatory path can move when patients need it to.
- Symptom and respiratory management — non-invasive ventilation, multidisciplinary care, feeding support, mobility assistance — has measurably improved quality and length of life across the board.
Research has also accelerated. The 2014 Ice Bucket Challenge raised more than $115 million for ALS research, money that funded the discovery of the NEK1 gene as an ALS risk factor and seeded multiple drug programs that are still in trials today. The Healey ALS Platform Trial at Mass General now tests several candidate drugs in parallel under a single protocol — a structural change designed to get answers faster.
The field is far from a cure. But the trajectory of the last decade — gene-targeted drugs, biomarker-driven trials, restructured trial designs — is the trajectory Tom hoped for.
If you would like to support research, patient care, or family resources — please give.
In Tom's memory
Where to give
- The ALS Association — research funding, advocacy, and direct support for patients and families.
- ALS Therapy Development Institute — non-profit drug discovery laboratory dedicated solely to ALS.
- I AM ALS — patient-led advocacy and community support.
- Project ALS — funds early-stage research and translational science.