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Golf Community Unites for ForeBatten Foundation’s Cause

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Golfers participating in a charity event for Batten disease.

News Summary

The ForeBatten Foundation is rallying the golf community to raise awareness and funds for Batten disease, a rare genetic condition affecting children. Founded by David and Karen Kahn after their daughters’ diagnoses, the foundation has gained support, raising over $6.4 million for research. Upcoming fundraising events, including auctions and tournaments, provide opportunities for contributions while offering unique golfing experiences. It’s a vital mission bringing hope and awareness to affected families and the potential for groundbreaking research in treatment.

Golf Community Comes Together for the ForeBatten Foundation!

If you love golf and want to lend a helping hand, the ForeBatten Foundation is the place to be! This amazing organization is shining a light on Batten disease, a rare genetic condition that affects about 1 in 12,500 children. It’s a cause that has rallied the golf community together, and here’s why it’s so important.

Understanding Batten Disease

Batten disease is no walk in the park. It typically starts showing symptoms in kids between ages 2 to 10, leading to difficulties like vision deterioration and seizures. As the condition progresses, children face tougher challenges, like loss of speech, motor skills, and an uptick in seizures. Unfortunately, most kids diagnosed with Batten disease don’t live past their early twenties, which turns this foundation’s mission into a critical one.

The Kahns and Their Mission

David and Karen Kahn, a couple with a passion for golf, started the ForeBatten Foundation after their twin daughters, Amelia and Makenzie, were diagnosed with Batten disease. With their daughters’ health declining and facing severe cognitive and physical challenges, the Kahns felt a strong pull to do something proactive. The foundation aims to raise awareness and funds for crucial research into this devastating ailment.

A Wave of Support from the Golf Community

The golf world has stepped up big time since a feature in a major golf publication in 2018. Not only did this coverage shed light on Batten disease, but it also saw the community rally around the Kahn family, leading to a surge in funding and awareness. Over the years, golf enthusiasts from all over have joined the cause, resulting in an astounding $6.4 million raised for Batten disease initiatives.

Get Involved: Fundraising Events and Auctions

Looking to get involved? The ForeBatten Foundation hosts regular fundraising events, and they’re always accepting donations. They’ve kicked off a massive auction that runs until March 5, 2025, filled with exciting items like rounds of golf at exclusive clubs and memorabilia. Fancy a round of golf with friends? Bids currently range anywhere from $1,100 to a whopping $28,000!

The next big event is happening soon at Topgolf, and it promises to be thrilling! It’s an excellent opportunity for golf fans to not only enjoy themselves but also contribute to these important fundraising efforts.

A Glimpse into Hope: Research and Progress

The research funded by the ForeBatten Foundation is particularly promising. Early clinical trials of a synthetic gene therapy are underway, showing encouraging results linked to juvenile Batten disease. With treatments starting to show promise, there is renewed hope that we might find ways to slow the progression of the disease, which is vital for families just like the Kahns.

Why Awareness Matters

Batten disease is an underfunded area due to its rarity, and the pharmaceutical industry often doesn’t prioritize such conditions. That’s why grassroots efforts, like those from the ForeBatten Foundation, are so incredibly vital. By pooling resources and raising awareness, they provide hope not just for affected families but for future generations as well.

What’s Up for Bid?

This auction isn’t just about golf; it features unique experiences with celebrities, athletes, and various lifestyle packages to appeal to everyone. Each item contributes to raising funds for groundbreaking research that could change the lives of children suffering from Batten disease.

Join the Cause

So why not swing into action? Whether you’re a golf aficionado or simply someone with a big heart, the ForeBatten Foundation is welcoming all kinds of support. Their mission goes beyond just raising money; it’s about bringing hope to families facing the challenges of Batten disease. So let’s unite and strike out against this devastating condition together!

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