#USA #Chapel Hill #Batten Disease #ForeBatten Foundation #Amelia and Makenzie

Sweet 16 Celebration Becomes a Lifeline for Twins

As most teenagers revel in newfound independence and the thrill of turning sixteen, twin sisters Amelia and Makenzie Kahn mark this monumental birthday with a poignant purpose: raising awareness and funding for Batten disease, a rare and fatal childhood disorder. This year, the ForeBatten Foundation is seizing the opportunity of their Sweet 16 to launch the "ForeBatten Sweet 16 Auction Fundraiser," running from March 15 to 18, 2026. This national initiative aims to highlight the struggles of families affected by this devastating condition while also promoting crucial research into potential treatments.

The implications of Batten disease, particularly the CLN3 variant, are severe. Those afflicted progressively lose their vision, cognitive abilities, and motor functions, culminating in a tragically shortened life span. Unfortunately, this disorder presently lacks a cure. However, thanks to groundbreaking research supported by the ForeBatten Foundation, Amelia and Makenzie are participants in an experimental personalized genetic treatment, a significant leap forward in advancing care options for children diagnosed with Batten disease.

Karen Kahn, mother of the twins and a co-founder of the ForeBatten Foundation, expresses deep gratitude for the support they have received. “Fourteen years in, we are thankful for every moment with our girls. Their Sweet 16 is not merely a celebration but a testament to hope. We are committed to propelling research forward to ensure other families might share in this precious chance,” she emphasizes.

The upcoming auction features an array of enticing offerings, including:

• - A luxurious four-day, three-night stay for three at Te Arai Links Resort in New Zealand, complemented by rounds of world-class golf.
• - An exclusive preview at Tiger Woods’ latest golf course, Trout National, set to open on April 16, 2026.
• - Access to a premier experience at the renowned Sand Hills Golf Club, with lodging and golf included for four participants.

The campaign has generated a diverse range of participation opportunities for supporters nationwide, from bidding in the online auction to direct donations, ultimately aiming to advance essential research for Batten disease.

In conjunction with the auction, the initiative will showcase ongoing stories and video updates from the Kahn family, detailing their journey and the impact donations make on combating this rare disease.

Awareness initiatives like this are crucial because rare diseases affect an estimated 300 million people globally. Each condition's isolated nature often limits fundraising potential, making campaigns like the ForeBatten Sweet 16 Auction vital not just for raising money, but for fostering community engagement and hope among families facing similar battles.

“This birthday celebration is reshaping what it means to turn 16,” remarks Carol Schwimmer, Director of the ForeBatten Foundation. “Every bid and donation plays a crucial role in advancing research, making it a pivotal moment for children worldwide.”

To learn more about the auction, participate, or stay updated on the twins’ journey, visit www.forebatten.org. The event promises to combine the joy of a birthday celebration with the urgent need for action against Batten disease, proving that with community support, hope can flourish even in the darkest circumstances.

About Batten Disease (CLN3)

Batten disease, specifically the CLN3 type, is characterized by its progressive nature, leading to severe neurological symptoms, including vision loss, seizures, cognitive decline, and loss of motor function. Currently, there is no established cure for this condition.

About ForeBatten Foundation

Founded in 2017, the ForeBatten Foundation has successfully raised over $8 million, guiding essential research and therapy development for Batten disease, thus creating pathways for new treatments and care options.