Organization
ALS Ride For Life: what they fund and how to apply
ALS Ride For Life is a US nonprofit based at Stony Brook University on Long Island, New York, started in 1997 by Christopher Pendergast, who had ALS himself. Its service area is split, and that is the thing to get straight first. Two of its grants are open across the country. Its van program is Long Island and neighboring areas only, and its scholarship is New York residents only.
The nationwide pieces are the ones worth your time from out of state: the Fred Bargetzi Caregiver Grant for respite care, and the Plan for Life Grant of up to $1,500 toward ALS-related legal work such as powers of attorney, advance directives, and estate planning. Both open in fixed windows a few times a year, so timing matters more than paperwork here.
How to use this page
Everything below comes from ALS Ride For Life’s own program pages, read on July 27, 2026. Their windows and program status change through the year, so treat the dates as a calendar to check against, not a promise. If you are outside New York, read only the two nationwide grants and skip the rest. If you are on Long Island, everything on this page is potentially yours.
What they provide
Fred Bargetzi Caregiver Grant (nationwide)
Financial assistance for respite care. Their page states the grant is available nationwide. Either the person with ALS or the caregiver may apply, and an applicant will only receive one grant.
Application windows: March 15 to April 15, June 15 to July 15, September 15 to October 15, and December 15 to January 15. Recipients are picked by random drawing on May 1, August 1, November 1, and February 1.
Important restriction in their own words: this grant can only be used for respite care costs incurred on or after the grant award date. Do not book and pay for respite first expecting reimbursement.
Plan for Life Grant, up to $1,500 (legal)
One-time legal grants of up to $1,500 for ALS-related legal services. Their examples: durable powers of attorney for health care or finances, living wills and medical advance directives, estate planning, and Medicaid eligibility.
Windows: January 15 to February 15 with selection March 1, April 15 to May 15 with selection June 1, July 15 to August 15 with selection September 1, and November 15 to December 15 with selection January 1.
Grants must be used within six months of notification. The program is described as being for people who cannot easily afford legal services. Their form asks for your physician’s name and phone number to verify the diagnosis.
Mobility Program, accessible vans (Long Island only)
Temporary exclusive use of a wheelchair accessible van. Their page states it is only available to people with ALS located on Long Island, New York and neighboring areas.
Availability depends on which vans are currently out on loan and what has been donated. The application asks for your diagnosis date, physician name and phone, how you intend to use the van, seats needed, and equipment needs such as ventilator use or head restraints.
Wheelchair-accessible van rental assistance
Short-term help with the cost of renting an accessible van. This is the alternative they point to for people outside the Long Island van loan area.
Apply at least seven days before the date the van is needed. If approved, all required documents must be submitted within five days. Approval is based on available funding, and a new application is needed for each rental period.
You need a valid credit card, copies of the driver’s license for every person who will drive, and an insurance policy with comprehensive and collision coverage for rentals.
Emotional support services
Up to 15 sessions for the person with ALS and family members or significant others. Sessions by phone, Zoom, or in person.
A limited number of grants are available. Their form asks for your diagnosis date, physician name, your relationship to the person with ALS, and what other support you already have.
End-of-life doula support
Up to 15 sessions with trained consultants who help you and your family prepare for the final part of a person’s life.
A limited number of grants are available. The form asks about hospice involvement if there is any. If you are working through documents as well as feelings, pair this with our life planning guide.
Caregiver and bereavement support groups
A caregiver support group, and a separate bereavement support group for partners of people who had ALS. You sign up through a form on each program page.
They do not publish a residency requirement for these, and they do not publish whether meetings are online or in person. Ask when you sign up.
College scholarship (New York residents)
For a graduating high school senior accepted to or expecting acceptance at an accredited college. The student must be a New York resident and must have or have had a direct and verifiable family connection to ALS.
Applications open February 1 and must be submitted online no later than March 1. Awards and checks go out on or about August 1. You provide a bursar’s bill and a short essay on your family’s connection to ALS.
Christopher Pendergast ALS Center of Excellence
An ALS clinic at 1320 Stony Brook Road, Suite E, Stony Brook, NY 11790. They describe it as the only certified ALS clinic on Long Island. Appointments on (631) 444-2599.
A visit runs about three and a half hours and covers occupational and physical therapy, nursing, speech pathology, dietetics, and physician review in one trip. It exists so Suffolk County families do not have to travel into Manhattan.
Who is eligible
There is no single rule. Eligibility changes program by program, which is why families give up on this organization too early or apply for the wrong thing.
- Everywhere in the US: the Fred Bargetzi Caregiver Grant. Their page says available nationwide.
- Probably everywhere: the Plan for Life legal grant. Their form takes any US state and they publish no residency restriction, but they do not state nationwide in words, so confirm before you rely on it.
- Long Island and neighboring areas only: the Mobility Program van loan.
- New York residents only: the college scholarship.
- Long Island in practice: the clinic, because you have to physically attend.
- No published residency rule: emotional support sessions, doula support, van rental assistance, and the support groups.
Across the grants, the constant is diagnosis. For the caregiver grant they state that only individuals with a confirmed medical diagnosis of ALS are eligible, and several forms ask for a physician’s name and phone number so the diagnosis can be checked.
How to apply
Applications are online forms on each program page. Get these together once and reuse them.
- Pick the right program from the eligibility list above. Applying to a Long Island program from out of state costs you a cycle.
- Check the window. Most grants only accept applications for one month at a time, four times a year.
- Have the diagnosis date and the diagnosing physician’s name and phone number written down. Nearly every form asks.
- For a van rental, have the credit card, every driver’s license, and the insurance policy showing comprehensive and collision coverage.
- For the legal grant, write one clear sentence on what you need drafted, such as a health care proxy or a Medicaid review.
- Submit inside the window, then put the selection date in your calendar so you know when to expect an answer.
- If anything is unclear, call (631) 444-1292 or email marilyn@alsrideforlife.org before the window closes, not after.
What they do not cover
- Home modifications are closed. Their page states the home modification program is currently closed, with no reopening date given. Do not plan a ramp or a bathroom around it.
- The caregiver grant is a lottery, not a needs ranking. Recipients are chosen by random drawing. A strong case does not improve your odds.
- One caregiver grant per applicant, ever. Their wording is that an applicant will only receive one grant, so use it when it counts.
- No retroactive respite. Only costs incurred on or after the award date qualify.
- The legal grant caps at $1,500 and expires. It must be used within six months of notification.
- Vans are loaned or subsidized, not given. Rental help is short term and depends on available funding.
- No published help with copays, medication, rent, or utilities. For those, start with our financial resources page.
- No published dollar figures for the caregiver grant, the emotional support sessions, or the doula sessions.
Time-sensitive, and commonly misread
Windows close. When we checked, the Fred Bargetzi Caregiver Grant was closed and due to reopen September 15 through October 15, and the college scholarship was no longer accepting applications for its cycle. Programs open and shut with funding, so check the program page itself on the day rather than trusting any summary, including this one.
The two van programs are different things. The Mobility Program lends you a van and is Long Island only. The rental assistance program helps pay for a van you rent yourself and needs seven days’ notice. People apply to the wrong one and lose two weeks.
Contact
- Main line: (631) 444-1292
- Fax: (631) 444-7565
- Email: marilyn@alsrideforlife.org
- Mail: ALS Ride For Life, Stony Brook University, HSC, Level 2, Rm 106, Stony Brook, NY 11794-8231
- Clinic appointments: (631) 444-2599. Christopher Pendergast ALS Center of Excellence, 1320 Stony Brook Road, Suite E, Stony Brook, NY 11790
Their pages worth opening: the full programs list, the Fred Bargetzi Caregiver Grant, the Plan for Life Grant, and the van rental assistance program.
Related on Knowals
Knowals is not affiliated with ALS Ride For Life or any organization named here. We describe them as a resource, nothing more, and we receive nothing for doing so. Application windows, program status, and eligibility change without notice, so confirm current terms with them directly before you rely on them. Educational content only, not medical, financial, or legal advice.