The golf community unites in support of the ForeBatten Foundation's mission to combat Batten disease.
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Sponsor Our ArticlesThe ForeBatten Foundation is gaining momentum as the golf community steps up to fight Batten disease, affecting 1 in 12,500 children. The Kahns, who lost their twin daughters to this rare genetic condition, drive awareness and raise over $6.4 million for research. Key fundraising events, including an auction running until March 5, 2025, promise thrilling golf experiences and memorabilia. The community rallies for hope amid ongoing challenges in research funding. Join the cause to support families impacted by this devastating disease and work towards a cure.
Golf lovers from all over are stepping up to make a big difference in the fight against Batten disease, a rare genetic condition that tragically impacts around 1 in 12,500 children. This heartbreaking disease often manifests in kids between the ages of 2 and 10, causing devastating symptoms such as vision loss and seizures. As the disease progresses, children can experience mental decline, loss of speech and motor skills, and a troubling increase in seizure activity. Unfortunately, most children diagnosed with Batten disease don’t typically survive beyond their early twenties, making the need for awareness and funding for research more urgent than ever.
At the heart of the ForeBatten Foundation’s efforts are the Kahns—a family whose lives took a dramatic turn when their twin daughters, Amelia and Makenzie, were diagnosed with this cruel disease. David Kahn, a golf course architect, and his wife, Karen, saw the need for change and launched the foundation to raise both awareness and funds specifically for Batten disease research. Their journey has sparked a surge of support from the golf community, especially after the family was featured in a GOLF Magazine profile in 2018.
The response from the golf world has been nothing short of inspiring. Since the foundation’s inception, more than $6.4 million has been raised to support critical research initiatives. The next big event is just around the corner, scheduled for March 4 at Topgolf. Golf enthusiasts are encouraged to take part in this exciting gathering, where the focus is on securing a better future for children afflicted by Batten disease.
One of the cornerstone fundraising efforts is a large auction, running until March 5, 2025. The auction is packed with enticing items, including rounds of golf at prestigious courses, unique memorabilia, celebrity meet-and-greets, and a variety of lifestyle packages aimed to draw in supporters from all walks of life. Enthusiasts can bid on exclusive experiences, with current bids for some items already soaring to staggering amounts, ranging from $1,100 to over $28,000.
The research funded by the ForeBatten Foundation is promising. Notably, efforts have led to pioneering clinical trials for a synthetic gene therapy aimed at addressing deficiencies related to CLN3 juvenile Batten disease. The initial treatments showing positive outcomes could signal renewed hope in the community as families rally for more efforts, fueled by the Kahns’ story and the mounting urgency to manage—or even cure—this distressing condition.
Despite the encouraging news, the road is long and challenging. Research into Batten disease is notoriously underfunded due to its rarity and the limited interest from pharmaceutical companies. Consequently, the focus remains on collaborative efforts through families and foundations like the ForeBatten Foundation, driven by a passionate community dedicated to making a difference.
For those looking to pitch in, there are several ways to contribute. Monetary donations are always welcome, and participating in fundraising events is a fantastic way to join this vital cause. The auction this year not only offers amazing golf experiences but also serves as an opportunity to unite in the fight against Batten disease. Grab a friend, place a bid, and help support essential research to aid families facing this battle.
As the Kahn family continues to navigate the ups and downs of living with Batten disease, their mission remains clear: to raise awareness and provide a glimmer of hope for families affected by this condition. With community support, the ForeBatten Foundation is working tirelessly to increase funding for research initiatives, ultimately striving to find effective treatments, and perhaps one day, a cure for this devastating disease.
Join the cause and be a part of something bigger. Together, we can make a significant impact in the lives of those affected by Batten disease. Let’s tee off for a future filled with hope!
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