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Golf Community Rallies Together to Fight Batten Disease

Golf enthusiasts gather to support the ForeBatten Foundation's mission against Batten disease.

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News Summary

The golfing community has united for the ForeBatten Foundation, raising awareness and funds for Batten disease research. Inspired by the Kahn family, whose twin daughters face this rare disorder, numerous fundraising activities have already generated over $6.4 million. As research progresses, hopes grow for effective treatments and a potential cure.

Golf Community Rallies Together to Fight Batten Disease

In a heartwarming show of support, the golfing community has joined forces for the ForeBatten Foundation, bringing much-needed awareness and funding for research into Batten disease. This rare genetic disorder affects about 1 in every 12,500 children, creating an urgent need for better resources to combat its effects, which often include vision loss and debilitating seizures. Typically surfacing between the ages of 2 and 10, Batten disease strikes fear into families, as its progression leads to significant mental impairment, loss of speech, motor skills, and increased seizure frequency.

A Family’s Quest for Change

The inspiration behind this incredible effort comes from David and Karen Kahn, whose twin daughters, Amelia and Makenzie, have both been diagnosed with this devastating condition. Understanding the critical straits in which their family now finds itself, the Kahns took the brave step of launching the ForeBatten Foundation. Their aim? To raise awareness and secure funds essential for research on this often-overlooked disease. Thanks to a profile in a well-known golf publication, the couple found a surge in support, uniting the golf community to propel their mission forward.

The Grim Reality of Batten Disease

Unfortunately, the statistics surrounding Batten disease aren’t encouraging. Children diagnosed with the condition generally do not survive beyond their early twenties, making each moment precious for families touched by this illness. The situation for the Kahn twins has escalated significantly, with Amelia now requiring a feeding tube and intensive care as the disease impacts her cognitive functions and mobility.

Rallying Support Through Fundraising

In response to these challenges, the ForeBatten Foundation has hosted a series of fundraising events, including a significant ongoing auction where golf enthusiasts can bid on experiences and memorabilia. The auction, which runs until March 5, 2025, features exciting opportunities to play at prestigious golf clubs, with current bids reaching anywhere from $1,100 to a staggering $28,000. Proceeds from these events go directly toward research on Batten disease.

A Ray of Hope Through Research

Thanks to funds raised by the ForeBatten Foundation, there’s a spark of hope on the horizon. Research efforts have progressed to early clinical trials for a synthetic gene therapy, specifically targeting deficiencies linked to CLN3 juvenile Batten disease. Initial treatments have shown promising results, igniting hope for slowing the disease’s progression for children like Amelia and Makenzie.

The Community’s Impact

Since its inception, the ForeBatten Foundation has managed to raise over $6.4 million, illustrating the immense impact the golf community can make when they unite for a common cause. The upcoming fundraiser on March 4 at Topgolf will further enhance these efforts, as attendees come together to support ongoing research initiatives.

What’s in the Auction?

The auction not only highlights exclusive golf experiences but also includes unique opportunities to mingle with celebrities and athletes, making it appealing to a wide range of participants. From lifestyle packages to exclusive golf outings, there’s something for every golfing fan to get excited about.

The Future We All Hope For

As the ForeBatten Foundation continues its mission, its overarching goal remains clear: to find effective treatments and ultimately a cure for Batten disease. The urgency to make advancements is palpable, especially for the sake of future generations battling this cruel condition. Through camaraderie and unwavering support, the golf community stands resilient, proving that even in the face of hardship, hope can still shine bright.