Registration is now open for fundraising events at four championship golf courses, whose fees will be used to fund research, care, and advocacy for neuromuscular disorders such as amyotrophic lateral sclerosis (ALS) and muscular dystrophy.
According to the Muscular Dystrophy Association (MDA), which is promoting the events, money raised will help to provide equal access for the over 300,000 families across the U.S. living with disabilities.
“This lineup of events is very important to me as someone living with muscular dystrophy who loves golf!” Keegan Kilroy, a world-ranked disabled golfer, said in a press release. “Golf is a game for everyone of all abilities. The work of MDA, bringing communities together to fundraise on the golf course, is changing lives through the research funding — and advocacy.”
“While we enjoy the challenges the game of golf presents, we are reminded of the critical need to increase funding for neuromuscular disease research,” Keegan, who was diagnosed with muscular dystrophy at age 18, added. “I’ve personally advocated for this with MDA, with my sister Elisabeth, who is now a post-doctoral scientist at Nationwide Children’s Hospital, an MDA Care Center, working to cure my disease!”
Events include the MDA ALS Golf Classic at the Arizona Biltmore Golf Club in Phoenix on May 6, and Mike Bellotti’s 28th Annual Toast to Strength Golf Tournament at the Eugene Country Club in Eugene, Oregon, on May 21.
From July 13–17, the Annual Edgar Martinez Golf Classic will be held at The Golf Club at Newcastle, presented by QFC & Liberty Mutual, in Newcastle, Washington.
The fourth event, the Mike Neufeldt Memorial Golf Outing at Western Lakes Golf Club, in Pewaukee, Wisconsin, will take place on Sept. 25.
“I’m so proud of how our community and sponsors have come together for families living with neuromuscular diseases,” said Edgar Martinez, Major League Baseball Hall of Famer who played with the Seattle Mariners. “In the 17 years I’ve been hosting this event, the funds raised have contributed to notable progress and treatments that are transforming lives.”
ALS, also known as Lou Gehrig’s disease, is a progressive neurological disorder characterized by the death of motor neurons, which control voluntary muscle movements. This leads to symptoms including stiff and twitching muscles, and a gradual weakening in muscular strength. ALS mostly appears sporadically, but is inherited in up to 15% of cases.
Muscular dystrophy is a group of inherited diseases with a progressive weakening and loss of control in muscles, caused by mutations in genes responsible for building and maintaining muscle tissue.
As the largest source of research funding for various neuromuscular diseases outside of the federal government, the MDA has committed more than $1 billion to accelerate the discovery of therapies and cures.
MDA’s MOVR is a data hub dedicated to collecting clinical, genetic, and patient-reported data for neuromuscular diseases to improve outcomes and accelerate the development of therapies.
“Golfing is an incredibly fun way to bring communities together, in support of people living with neuromuscular diseases, while raising funds for scientific and clinical breakthroughs to save lives,” said Donald S. Wood, PhD, president and CEO of the MDA.
“Funds raised from events like these have led to 12 FDA-approved treatments for neuromuscular diseases in the past six years alone. We know that more funding will lead to cures,” he added.
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