Golf Community Rallies for ForeBatten Foundation to Combat Batten Disease

News Summary

The golf community unites to support the ForeBatten Foundation, established by the Kahn family to combat Batten disease, a devastating condition affecting children. The foundation has already raised over $6.4 million for research, inspiring hope for effective treatments. Upcoming fundraising events, including a major auction and a day at Topgolf, aim to increase awareness and funds for ongoing research into this rare genetic disorder. The fight against Batten disease is a shared mission, bringing families and golf enthusiasts together for a cause that genuinely makes a difference.

Golf Community Rallies for the ForeBatten Foundation: Aiming to Combat Batten Disease

In a heartwarming display of unity, the golf community is coming together to shine a light on an incredibly rare yet devastating condition known as Batten disease. This genetic disorder affects about 1 in 12,500 children, manifesting its dreadful symptoms between the ages of 2 to 10. Symptoms like vision loss and seizures are just the beginning, as the disease progresses to severe cognitive decline, loss of speech, and motor skills, ultimately leading to shortened life expectancy. Currently, affected children typically do not live beyond their early twenties.

Meet the Kahns: Turning Heartache into Hope

At the heart of this fundraising initiative are David and Karen Kahn, who have twin daughters, Amelia and Makenzie, both diagnosed with Batten disease. Faced with the harsh realities of this condition, the Kahns launched the ForeBatten Foundation, a heartfelt mission to raise awareness and funds for groundbreaking research.

Thanks to a feature in GOLF Magazine back in 2018, awareness around this critical issue has significantly increased, and the golf community has rallied support around the Kahn family. The foundation aims not just to fund research but also to spread awareness about Batten disease, a must for families going through such challenging times.

The Foundation’s Mission: Research and Hope

The mission of the ForeBatten Foundation is vital, especially considering the limited funding for Batten disease research. With pharmaceutical interest nearly nonexistent due to the rarity of the condition, families like the Kahns are stepping in to fill that gap. Their determination is palpable, and they have managed to raise over $6.4 million for the foundation since its inception.

Upcoming fundraising events include a major auction featuring a variety of golf experiences and memorabilia to support the foundation’s research endeavors. The auction is set to close on March 5, 2025, offering golf enthusiasts an opportunity to bid on exclusive items, with current bids spanning from $1,100 to an astronomical $28,000.

A Day at Topgolf and More

Mark your calendars! The next big event to support the ForeBatten Foundation is scheduled for March 4, and it will take place at Topgolf. This fun-filled day is expected to bring together golfers, families, and supporters, all rallying for a cause that touches hearts. Besides great golf, the auction will feature unique experiences with celebrities and athletes, as well as intriguing lifestyle packages to broaden participation.

The funds generated will pave the way for more research initiatives aimed at finding effective treatments for Batten disease, which is desperately needed. Research funded by the foundation has already led to promising early clinical trials for a synthetic gene therapy designed to address deficiencies linked to CLN3 juvenile Batten disease. Early treatments for Amelia and Makenzie show encouraging results, igniting a spark of hope among families facing this condition.

Every Bid Counts: Join the Fight

The ongoing auction is not just about golf; it embodies the shared hope of families and the broader community to find effective treatments and, ultimately, a cure for Batten disease. All funds raised contribute to collaborative research that aims to transform lives for future generations.

The Kahns emphasize that their fight is much bigger than their family alone; it’s about giving hope to every family affected by Batten disease. So, whether you’re a golf enthusiast, a supporter of rare disease research, or simply someone who believes in making a difference, consider participating in the upcoming events or placing a bid in the auction. In doing so, you join a larger movement that seeks to change lives and bring light to a dark path.

Together, the golf community continues to strengthen and rally, making strides towards overcoming the challenges posed by Batten disease. With dedication, compassion, and a shared mission, the fight against this rare disorder is gaining momentum, proving that hope is always worth pursuing.

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