BEACON FALLS — Five years ago, The Susie Foundation chose to host a kickball tournament as a unique way to fundraise. To date, the annual tournament has raised more than $50,000 to help Connecticut families battling ALS.
“Without the kindness and generosity that all of you shared and share with us today, none of that would be possible,” said Aaron Smith, chairman of The Susie Foundation’s Board of Directors, as he addressed the 14 teams, volunteers and spectators that came out for the fifth annual Susie Classic kickball tournament Saturday at the Beacon Falls Recreation Complex.
The Susie Foundation is a Beacon Falls-based nonprofit that supports Connecticut families fighting ALS. Beacon Falls native Ryan Matthews started the foundation after his mother, Susie, died from ALS in 2011. He serves as executive director for the foundation.
The Susie Classic is the foundation’s signature fundraiser. Every dollar raised from the tournament goes directly to help people with ALS and their families, Matthews said.
In May, The Susie Foundation provided $6,500 in grants to assist nine families across Connecticut through the foundation’s flex grant program. The program provides financial assistance to homebound patients and their families to pay for things that aren’t covered by health care, including home modifications, medical costs and equipment.
Matthews said the program is designed to help keep people with ALS in their homes.
Amanda Roberts and her mother, Kay, who has been living with ALS for three years, are among the people that have been helped by the flex grant program.
“ALS is a disease that can bankrupt a patient and family in the blink of an eye, and there is a desperate need for a cure,” Amanda Roberts said. “However, right now, in the present, there’s a huge need for support like The Susie Foundation provides.”
Along with support, Ben McClain said attitude is key to battling ALS.
McClain read a letter written by his father, David McClain, who has been living with ALS for close to 15 years.
“Tex,” as McClain’s father is known, uses a special computer that reads his eyes to type. In the letter, Tex talks about how he is paralyzed from the shoulders down, can’t breathe on his own, drools uncontrollably, has a feeding tube implanted in his stomach, and will ultimately die from suffocation or pneumonia — the two main causes of death for people with ALS.
In the letter, Tex states he tells people this not so they feel sorry for him, but rather to stress that ALS can take away many things but not his attitude, spirit and soul.
“ALS can’t touch his attitude,” Ben McClain said. “Attitude is what got you guys this far. Attitude is what’s going to keep us going.”
Before the teams headed to the fields to play for the golden kickball trophy, Smith asked the players to think about how lucky they are to be able to play kickball and how many others in the state would love to be in their shoes.
“They only wish that they had the energy and mobility that we all have, and it’s because of donations that you guys have provided to The Susie Foundation that we’re able to provide support to them,” Smith said.