BEACON FALLS — For two years, Beacon Falls native Ryan Matthews helped care for his mother, Susan Ready Matthews, as she battled a terminal illness.
As Matthews’ mother fought amyotrophic lateral sclerosis — better known as Lou Gehrig’s disease — his family faced several hardships, including about $100,000 in expenses when they sought full-time medical care for his mother.
Matthews, now 26, said costs of medication, hospital visits, a handicap-accessible van, home modifications, occupational and physical therapy and visits to specialists weighed heavily on his family.
“In addition to that loss of income, because she could no longer work, it was a really huge hit on my family’s financial situation,” Matthews said.
Susan died at age 57 in April 2011, and in 2013, in an effort to honor his mother’s memory and help other victims, Matthews founded The Susie Foundation, an organization dedicated to fundraising for and providing resources to Connecticut families living with ALS.
Although The Susie Foundation has held numerous fundraisers in the past two years, the volunteer-run nonprofit recently took another step toward accomplishing its mission by launching its Flex Grant program, which awards financial reimbursement to qualified families.
“This is a way for us … to start making a difference in the community immediately,” said Matthews, the group’s executive director. “We believe there’s a meaningfulness in staying home. With ALS taking so much away from patients and families, being able to help keep them in their homes and not worrying so much. … We’re just looking to lend a hand in that process for families.”
ALS is a degenerative motor neuron disorder that takes healthy, physically capable individuals, and slips them into a full-body paralysis.
At the time of diagnosis, patients are expected to live an additional two to five years. There is no cure.
The Flex Grant program will award up to $1,000 per applicant to help offset expenses for homebound patients and families impacted by ALS.
The spring grant application deadline for the program is April 20. Eligible applicants include all residents of Connecticut who are homebound and have a definitive ALS diagnosis. For more information, including specific eligibility requirements, or to donate, visit TheSusieFoundation.org or email ryan.matthews@thesusiefoundation.org.
Matthews said the grant will reimburse things not traditionally covered by insurance, including respite care, certain adaptive devices, medical expenses and equipment, as well as home modifications.
“Although it’s not going to cover all their financial needs and liabilities, it helps to offset those costs,” Matthews said. “Families can go out and buy what they need that’s not traditionally covered by insurance and receive financial reimbursement for making the purchases they need to have stable and meaningful lives. That’s really what it’s all about.”
Matthews said The Susie Foundation has set a goal of distributing $12,500 in grant money each year, and already has a few applicants for the grant.
He said the organization is also partnering with hospitals and care providers across the state to reach the 200 Connecticut residents living with ALS.
Additionally, it has been working in conjunction with the Connecticut chapter of the ALS Association of America to reach patients.
“It’s been a really incredible journey with The Susie Foundation, and having the support of friends, family and the community has been overwhelming,” Matthews said. “To be able to take this next step in the history of the agency and start giving back directly to people … really brings a tremendous amount of joy to my life.”
