Update 10/25/25: WOW! We have been absolutely blown away by the amount of support you all have shown. Thank you, thank you, a million times thank you! At the request of a few friends, we created an instagram page so everyone can follow along with Ben's progress! Come follow along at @Rolling_with_Ben_ALS
My husband Ben was diagnosed with ALS in September 2024. We’re fundraising for an adaptable power wheelchair, accessible transportation, home ramps, a speech-generating device, and ongoing medical costs.
We met his $4,000 out-of-pocket maximum for 2025 by the end of May, and a new $4,000 deductible resets in January 2026. Your donation help keeps Ben moving, breathing, and communicating.
OUR STORY (FROM CHRISTIE)
This is my husband, Ben, the father of my children and my favorite human. In September 2024, he was diagnosed with ALS (Lou Gehrig’s disease, remember the Ice Bucket Challenge?). ALS is unforgiving and fast-changing. There is no known cause in his case. Typical survival is often measured in years, not decades, which is why we’re moving quickly to put the right supports in place now.
I’m a physician in training (a medical resident), which means demanding hours and a resident’s salary for the next few years. We have one child in college in Boston and another about to graduate from high school. The needs come up faster than I can get to them, and I’m learning to say yes to help when it’s offered. That’s what this page is: our very real ask for help so Ben can keep his mobility, breathing, and voice as ALS progresses.
WHERE WE ARE RIGHT NOW
Insurance reality: We reached Ben’s $4,000 out-of-pocket max for 2025 by the end of May. The $4,000 deductible for 2026 resets in January. Even with insurance and a payment plan from the Mayo Clinic, his medical bills are already in the thousands.
Current chair limits: The power chair Ben has essentially keeps him house-bound unless we plan an outing. His chair struggles on carpet, gravel, and inclines, and it can’t safely mount the devices he’ll need next, like a speech-generating device or a mount for BiPAP if he requires it around the clock.
Breathing and music: Ben recently had to stop touring due to breathing issues. While he sleeps, his oxygen drops to the low 80s because his diaphragm is getting weaker. To put that into perspective, the normal range is 93+. He is in the process of getting insurance approval for a BiPAP machine that will help him breathe. Music will always be a part of our life, but, unfortunately, Ben can’t create it anymore.
Housing curveball: We’ve been very recently notified that the house we’re living in will be sold, so relocation logistics are now part of this picture, too.
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WHY WE'RE FUNDRAISING & OUR PRIORITIES
An Adaptable Power Wheelchair System (Learn more about power wheelchair needs for ALS patients here: https://teamgleason.org/pals-resource/mobility/)
- Alternate access controls (head array, sip and puff, or eye-gaze) for when hand use declines.
- Secure mounting for a speech-generating device and, if needed, BiPAP to travel with him during the day.
- Robust drive performance (indoor carpets, outdoor gravel/inclines) so appointments and everyday life are actually reachable.
- Power Elevating Legs and Tilt functions to offload pressure and reduce risk of pressure sores.
- Estimated costs: Chairs that can accommodate future needs including a communication device and mounting for eye-gaze are expected to be significants (early estimates are around $15,000, we’ll post quotes as we get them).
Accessible Transportation
- Either outfitting our current vehicle iwth a ramp/lift and tie-downs or replacing it with a vehicle that can safely carry a power chair.
- Because we may have to relocate, we’re choosing a transport setup that works with unknown future driveways/parking (slope/clearance) and isn’t tied to one house.
- Ongoing maintenance so appointments aren’t missed because the van/lift is down.
Home Access & Safety
- Threshold and entry ramps so Ben can move roon-to-room without barriers.
- Small home modifications that prevent falls and reduce caregiver strain.
- Housing & relocation note: The home we’re in is being sold. We’re prioritizing portable solutions (threshold ramps, modular ramp sections, vehicle-mounted equipment) so everything we fund travels with Ben and works in the next home too.
Caregiving Coverage
- Paid caregiver hours when I’m in the hospital and Ben needs support at home.
- We are also working on applying for ALTCS which can help provide some caregiver supports to offset the cost.
Medical Costs Not Covered by Insurance
- Copays, supplies, equipment trials, and other out-of-pocket needs as they come up.
WHAT YOUR GIFT MAKES POSSIBLE
ALS changes quickly. Ben’s disease has already progressed faster than we hoped and expected. Getting the right gear before it’s urgent can prevent hospitalizations, protect his independence, and keep our family functioning. Your support becomes tangible things: a ramp that makes a doorway passable, a lift that gets him to clinic safely, or the device that lets his thoughts be heard clearly.
TRANSPARENCY & STEWARDSHIP
- We’ll post updates regularly with photos/videos as milestones happen (wheelchair evaluation, transportation solution installed, ramps in place).
- We’ll share itemized costs and receipts as we go.
- If funds exceed a line item, we’ll apply the remainder to the next highest priority listed here.
- If plans change, we’ll update this page promptly.
- Donations go directly to our family for Ben’s care.
- Goal setting: We’re using GoFundMe’s automated goal so the progress bar scales as donations and quotes come in. Our full budget need is $110,000 - see the breakdown below.
*****
BEN, IN 5 FACTS
- Diagnosed with ALS in September 2024 - spontaneous onset, no known family history, negative genetic testing.
- Lifelong musician - Inspired by the first metal band he listened to, Metallica, Ben has spent his life playing music. He is a vocalist and has enjoyed playing guitar, bass, and drums. One of my favorite memories is of him walking around the house carrying a guitar, plucking strings and making up silly songs.
- Devoted dad and husband - Whether he’s making a last minute run to the store to buy something one of the kids forgot they needed for school, helping solve a mini life crisis, or celebrating a major milestone, Ben has always been invested in showing up for his family and being an amazing husband and father. He wants to continue to stay present for everyday, ordinary moments as much as the big milestones.
- Giver - He never ceases to amaze me with his kindness and generosity. Ben once bought a case of dog food, a dog bowl, water, and some non-perishable food for a homeless lady and her dog after he passed her while driving. This is just a small glimpse into the quiet moments he has regularly had without asking for anything in return.
- Quietly stubborn (in the best way) - He shows up for people, and hates asking for help. Yes, I made a bet that people would show up for him.
*****
A NOTE TO OUR FRIENDS (Yes, the bet)
If you’re here from Facebook, help me win the bet with Ben that people do want to help! He needs the giggle, and frankly, I like winning. Ben, I know how you feel about pages like this. You’ve spent your life showing up for other people. It’s our turn to let people show up for you. I love you. ❤️
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BUDGET PLAN (will update with quotes)
- Realistic 2025 estimates below. We’ll replace ranges with quotes/receipts. Donors can fund a whole line item (we’ll mark Funded by [name] or Anonymous).
- We’re using automated goals for momentum. The full need is ~$110,000 and the itemized budget is below.
A) Accessible Transportation
Path A - Modify current vehicle (carry the chair, transfers required)
Path A typical subtotal: $3,000-$5,000
- Receiver hitch + wiring (installed): $500-$1,300 -- Sponsor: $1,000
- Exterior power chair lift (hitch‑mounted) + swing‑away (installed): $2,500-$3,500 -- Sponsor: $3,000
- OR Interior cargo platform/hoist lift (installed): $3,500-$4,500 -- Sponsor: $4,000
- Suspension helpers (if needed): $300-$900 -- Sponsor: $600
Path B - Replace with a wheelchair‑accessible vehicle (ride in the chair)
WAV = wheelchair-accessible vehicle
Path B typical subtotal: $33,000-$105,000
- Used WAV (rear‑entry/manual ramp): $30,000-$45,000 -- Sponsor: $40,000
- Used WAV (side‑entry/power ramp): $45,000-$60,000+ -- Sponsor: $55,000
- New WAV minivan (power side‑entry/in‑floor): $80,000-$95,000+ -- Sponsor: $90,000
- New WAV SUV conversion: $80,000-$95,000+ -- Sponsor: $90,000
- AZ taxes/fees (approx.): +9-11% of vehicle price
B) Mobility & Communication (on/with the chair)
- Speech‑generating device (eye‑gaze capable) + secure mount: $10,000-$18,000 -- Sponsor: $15,000
- Alternate access controls (head array / sip‑and‑puff / eye‑gaze): $3,000-$10,000 -- Sponsor: $7,500
- BiPAP mounting/integration for the chair (if/when needed): $300-$1,200 -- Sponsor: $800
- Chair power/charging accessories (vehicle inverter/backup): $200-$600 -- Sponsor: $400
- Wheelchair base & seating upgrades (insurance‑dependent): $0-$10,000 OOP -- Sponsor: $5,000
C) Home Access & Safety
- Threshold ramps (3-6 locations): $200-$500 each (total $600-$3,000) -- Sponsor: $1,200
- Portable folding ramp (6-8 ft): $300–$800 -- Sponsor: $600
- Modular ramp sections (entry): $1,500–$5,000 -- Sponsor: $3,500
- Door/rail & small safety modifications: $500–$2,500 -- Sponsor: $1,500
D) Caregiving & Medical (not fully covered)
- Part‑time caregiver coverage (8-12 hrs/week at $25-$35/hr): $800-$1,680 per month -- Sponsor: $1,500/month
- Initial caregiver fund (3-6 months): $2,400-$10,000 -- Sponsor: $5,000
- 2026 out‑of‑pocket (deductible reset + co‑pays): $5,000-$6,000 -- Sponsor: $5,500
- Supplies (skin care, positioning, filters, tubing, etc.): $100-$300 per month (annual $1,200-$3,600) -- Sponsor: $2,000
E) Contingency & Install/Shipping
10% contingency on equipment: $1,000–$5,000 — Sponsor: $2,500
Example Totals (will refine with quotes)
These totals favor portable, non-structural solutions because our current house is being sold.
GOOD: Path A (exterior lift) + speech device + basic ramps + 3 months caregiver + 2026 OOP = $35,000–$50,000
BETTER: Used WAV (rear‑entry) + speech device + home mods + 6 months caregiver + 2026 OOP = $70,000-$110,000
BEST: New WAV (power side-entry) + full alternate controls + robust home mods + 9 months caregiver + contingency = $110,000-$150,000
Status legend we’ll use in updates: ✅ Funded • In‑Progress • Receipt Posted
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FAQ:
What happens if donations exceed a specific item cost?
- We’ll apply the remainder to the next-highest-priority need an share updates so you can see the impact.
Are donations tax-deductible?
- Unfortunately, no. Donations go directly to our family for Ben’s care and are not tax-deductible.
- If you would like to make a tax-deductible donation to help support people with ALS and ALS research, check out these amazing foundations that have already helped us immensely: Team Gleason https://teamgleason.app.neoncrm.com/forms/donate and ALS Arizona https://alsaz.org/ways-to-give/
How soon will you start?
- Immediately! We’ll post updates as we secure equipment evaluations, quotes, and installations.
Can I help in other ways?
- Yes! Sharing the campaign, cooking a meal (just make sure it’s gluten free, please), or helping with small tasks makes a big difference.
Why mention housing? Are you fundraising for moving costs?
- No. Funds are for portable accessibility and medical needs: wheelchair/controls, speech-generating device, ramps we can take with us, and a safe transport solution. If someone wants to earmark a gift for installation at a new place (e.g., modular ramp sections), we’ll label it and report back. Otherwise, we will not use donations for rent or general moving expenses.
Why does the goal change?
- I turned on GoFundMe’s automated goal so the progress bar stays realistic as donations arrive and quotes finalize. The full budget need is ~$110,000.
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Thank you for reading, sharing, and helping us build what Ben needs, when he needs it. We love and appreciate you all.
Organizer
