News Summary
The ForeBatten Foundation has emerged as a vital force in advocating for families affected by Batten disease, a rare genetic disorder. The Kahn family, impacted by this condition, founded the foundation to raise awareness and support research for a cure. With the golf community backing their efforts, they have raised over $6.4 million through fundraising events. These initiatives aim to provide hope for affected children, while critical research efforts continue to explore potential treatments. The upcoming event at Topgolf on March 4 signifies a step toward a collective future in fighting this challenging disease.
Golf Community Unites for a Greater Cause
In a heartwarming tale that showcases the power of community, the ForeBatten Foundation stands as a beacon of hope for families affected by Batten disease, a rare genetic disorder impacting about 1 in 12,500 children. This condition unfolds in childhood, generally between the ages of 2 to 10, bringing with it a series of devastating symptoms that include vision loss and seizures.
Understanding Batten Disease
Batten disease is not just a medical term; it is a harsh reality for many. The progression of this condition can lead to serious complications such as mental impairment, loss of speech, and increasing frequency of seizures. Sadly, most children diagnosed with Batten disease face a limited life expectancy, usually not living beyond their early twenties. It’s a grim scenario that often leaves families searching for answers and solutions.
The Inspiring Story of the Kahn Family
Enter the Kahns, a family that has turned personal tragedy into a mission for change. David Kahn, a talented golf course architect, along with his wife Karen, has twin daughters, Amelia and Makenzie, who have both been diagnosed with Batten disease. Feeling desperate yet determined, the Kahns founded the ForeBatten Foundation to not only raise awareness but also to fund critical research aimed at finding a cure.
Golfing for a Cause
The golf community, already known for its camaraderie, stepped up in a remarkable way. Following a profile in GOLF Magazine in 2018, awareness skyrocketed, leading to increased funding and support for those battling this disease. To date, the efforts of the golf community have raised an astonishing $6.4 million for the ForeBatten Foundation!
Engaging the Public with Fundraising Events
The ForeBatten Foundation hosts various fundraising events, inviting everyone to contribute in their unique way. One of the most exciting initiatives is an ongoing auction that runs until March 5, 2025. This auction features enticing items such as rounds of golf at prestigious golf clubs, with bids ranging from $1,100 to an incredible $28,000! It’s a thrilling opportunity for golf enthusiasts to play on exclusive courses while also doing their part to support research into Batten disease.
Hope on the Horizon
With ongoing research funded by the ForeBatten Foundation, there are encouraging signs of progress. Initial clinical trials are underway for a synthetic gene therapy designed to address deficiencies linked to the CLN3 juvenile form of Batten disease. Early treatments for Amelia and Makenzie have yielded positive outcomes, giving new hope to slow the disease’s relentless progression.
Looking Ahead: Upcoming Events
The next major fundraiser for the ForeBatten Foundation is set for March 4 at Topgolf. This event promises not only an afternoon of fun and golfing but also an avenue to show solidarity with families impacted by Batten disease.
Why Every Contribution Matters
Research for Batten disease struggles with underfunding, primarily due to its rarity and the general lack of pharmaceutical interest. The efforts of the ForeBatten Foundation are crucial in pooling resources through family foundations like theirs to advance collaborative research initiatives. Their overarching goal is clear: to find effective treatments and ultimately, a cure.
Last Thoughts
As we follow the journey of the Kahn family, one thing becomes abundantly clear: the mission of the ForeBatten Foundation is one of urgency and hope. Their dedication to raising awareness and funding for Batten disease highlights not just their personal battle, but the fight for an entire community. Together, through initiatives like auctions and fundraising events, they are paving the way for brighter futures and potential breakthroughs for generations to come.
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Additional Resources
- Golf Pass: ForeBatten Foundation Auction
- Wikipedia: Batten disease
- Golf Digest: ForeBatten Golf Auction 2025
- Google Search: Batten disease
- Golf.com: David Kahn’s Fight Against Batten Disease
- Encyclopedia Britannica: Neurological Disease
- Golf Digest: David Kahn and the ForeBatten Foundation
- Google News: ForeBatten Foundation
- Golf.com: Fight Against Batten Disease Continues
- ESPN: Top Pro Golfers Embrace Young Boy in Race for Cure
