Hello friends, family, and all who’ve found this page! Thanks for being here :)

As you may know, my dad, Mark, was diagnosed with ALS in April 2021 and it’s been a surreal 5+ years ever since. 

It started with a loss of some dexterity in his hands, which seemed fairly minor. He had some difficulty gripping things, but life continued mostly as normal! Surely this man did not have a progressive disease of the nervous system, one without a cure! 

Slowly, though, he started losing additional abilities and things got more real. In 2022 it got harder to use his arms. At the end of 2023, after a scary fall, he could no longer walk on his own. And now, in 2026, his physical abilities are few. He’s still able to use his iPad, can thankfully still talk and chew and, ever persistent and creative, continues to search for new gadgets and gizmos to make life easier for him and my mom. But life looks a lot different today, for all of us. 

In 2024, I ran the NYC marathon as part of Team ALS in honor of my dad, always my biggest cheerleader in my running pursuits, and a big reason why the city of New York means so much to me. This year, while I continue to run in his honor, I’m also running in honor of my mom. My mom, who does it all. Who gets my dad out of bed in the morning, assists him in the bathroom, feeds him, adjusts his body throughout the day (all things we take for granted, like flipping his arm from palm up to palm down, or sitting him back in his chair), settles him back into bed at night (sometimes waking up in the middle of the night to ease his pain), and anything else you can think of that a person who can’t move on their own might need. Not only is continuous in-home care prohibitively expensive, but this allows my parents to maintain a sense of normalcy in their lives and for my dad to continue to live in a way that’s comfortable for him (or at least as comfortable as one can be with ALS). 

This disease is heartbreaking and makes me sad and angry everyday thinking about the life it’s stolen from my family, and so many others. Which is why I run for a cause, to give hope to all those affected. When you donate to ALS United your money goes to:

Care Services: 

•  Support groups, caregiver support, mental health services, equipment loans, multidisciplinary ALS clinics, patient & family grants, transportation, home assessments

Advocacy: 

• Achievements include: increased federal funding for ALS research, the successful passage of the Medicare waiver for ALS patients, the establishment of presumptive disability recognition by the Social Security Administration, and the allocation of state funding in both New York and New Jersey.

Research

• $17 million expended on ALS-specific research 

Education & Resources

• Publications, videos, and an annual education & resource summit to help with navigating the ALS journey

In 2024 this looked like: 

• 1,268 people living with ALS served
• 1,486 people attended 142 support groups 
• 908 patients received care and clinical management of ALS through one of our 10 multidisciplinary centers
• 1,016 home visits were conducted
• 1,158 pieces of durable medical equipment and/or communication devices loaned free of charge. 
• 214 rides were provided free of charge for patients to attend appointments at one of our multidisciplinary clinics. 
• $320,000 in monetary grants to cover in-home health care, home accessibility upgrades, and additional expenses such as prescription co-pays, and more.

If you’ve made it this far, please join in the fight and donate today! 

Together, we end ALS!