WALTHAM, MASS. – The bathroom door in Salvatore Salamone’s Fitchburg, Mass., home was too narrow to permit his motorized wheelchair, making every trip to the bathroom an unsafe ordeal. Salamone has multiple sclerosis, an expensive disease—it is estimated that MS can cost upwards of $70,000 a year—and remodeling the bathroom was not feasible with the rest of life’s expenses.
That was until two non-profit organizations—one big and one small, one long-established and one relatively new but both dedicated to helping people with MS live their best lives—joined forces. The National Multiple Sclerosis Society
and the Multiple Sclerosis Community Foundation
(MSCF) pooled resources to help improve quality of life for people with MS.
For Salamone, that meant a bathroom entry that permits his wheelchair and a shower stall instead of a bathtub. His vanity was modified so his wheelchair rolls under the sink, getting him closer to the mirror and running water.
“I can now shave and brush my teeth no problem,” said Salamone, adding that his quality of life has improved greatly. “It is wonderful now.”
The National Multiple Sclerosis Society offers financial assistance to help offset a range of costs for people with MS who qualify. Individuals with MS can apply for upwards of $2,000 within a fiscal year for medically necessary items, including wheelchair ramps, air conditioners, and personal care attendants, and many more categories of need. While funds are limited, Society staff work to leverage resources from other organization, private and public, to ensure people with MS get the help they need. That’s where the Multiple Sclerosis Community Foundation comes in, providing additional funds that make expensive home modification a reality for people with MS.
“These projects cost a lot of money. We had a person in Fitchburg who couldn’t get the wheelchair through the door frame of the bathroom!” said Kevin Lombardi, who created the MSCF two years ago. “Once, I had to watch a man carry his wife into their home. That was when I decided to help the individual.”
, President of the Society’s Greater New England Chapter, called Lombardi’s help considerable. Not only does he serve on the Board of Trustees for the Greater New England Chapter, he participates in its largest fundraising events and has raised hundreds of thousands of dollars. In the spring, Lombardi runs to the top of Boston’s John Hancock Tower in “MS Climb to the Top
,” and he plunges through challenging obstacles bathed in mud at “Muckfest MS
.” In summer, he pedals 150 miles in two days at the Bike MS: Cape Cod Getaway
, and the weekend of September 11, 2015, he’ll lead his team, The Lombardi Party, on a 50-mile trek during Challenge Walk MS: Cape Cod
for the ninth time.
“Kevin starting the MS Community Foundation was a meaningful development and came as no surprise to anyone who knows him,” Espino said. “The average cost of living with MS can be staggering. By partnering with the MS Community Foundation and other non-profits, the National MS Society is extending its reach and ensuring that our constituents–the people who live with MS every day–can live their best lives.”
The National MS Society reviews requests for financial assistance and reaches out to the MS Community Foundation when there is an opportunity to collaborate. By working together, the organizations are helping people with MS complete projects that wouldn’t have been accomplished otherwise.
“The financial burden of MS can be incredibly stressful when there are so many out-of-pocket costs related to maintaining health, safety and independence,” said Dawn Russo, National MS Society Senior Program Manager for Direct Services.
Lombardi, who lives in Peabody, Mass., is a Director for Government Healthcare Solutions at Navigant Consulting, Inc.
, located in Boston, Mass., and is no stranger to the effects of MS. Three generations of his family have MS. He was inspired to create the MS Community Foundation to provide essential support to families living with MS and ease their burden.
“I don’t believe in making excuses, you engage and you go at it,” he said of his wide participation and fundraising on behalf of people with MS. “But I’m not just a fundraiser. I’m an advocate. I make people aware of what is happening out there.”
When he was fundraising for the National MS Society he would sometimes hear people say they preferred to donate to smaller non-profits and they wanted to know exactly how the money was spent. Lombardi got together with friends to discuss how to make sure these potential donors gave to the cause and they came up with the idea for the Foundation. Those friends now serve on the MSCF board of directors.
So far, the Foundation, with help from the National MS Society, has helped ten people with MS in New England with projects including bathroom remodels, ramp installation, stairlifts, and a handicapped accessible van costing anywhere from $4,000 to $12,000. One of them was Kathy Thomas of Nashua, N.H., who was diagnosed with MS a little more than a year ago. She was having trouble getting out of her bathtub, nervous she might fall.
“I’ve fallen quite a few times. I could hit my head and, you know, be laying there and that’s a lot of anxiety. I have been terrified the entire year” she said.
Her new shower stall has erased her anxiety. “I love it,” she said. “I get out of the shower and I never worry. It’s amazing. You never think about it until it actually happens to you.”