Fore the Journey.
Fore the Cure.
We provide funding, support
and hope for the Batten community.
The Kahn's Story
Karen and David Kahn were elated to welcome twin girls Amelia and Makenzie into the world in 2010. But after just 18 months, Amelia began having speech issues. At age two, she was diagnosed with Autism. Life became a daily struggle with Amelia’s behavioral issues. In early 2017, both girls started experiencing vision issues, and shortly after, the Kahns received the devastating news that both girls had been diagnosed with juvenile Batten disease (CLN3); a rare and fatal genetic disorder of the nervous system which leads to vision loss, seizures, and loss of speech and motor function.
The Kahn family’s life now consists of adapting to their daughters’ vision loss, daily struggles with childhood dementia, managing frequent seizures, modified school schedules, and a multitude of doctor appointments. They do their best to create a safe, happy life for their girls despite the fate that lies ahead of them. They are driven by the hope that a treatment or cure can change the future for all children affected by Batten disease.
After receiving the girls’ diagnosis in early 2017, the Kahn family created The ForeBatten Foundation. “Fore” means “ahead” or “forward,” and those familiar with golf know it’s a term you hear when something unavoidable is heading your way—much like Batten disease. The Kahn family is taking a swing at Batten disease, and with your help, the Kahn family can raise money to fund future research studies to help all children affected by Batten disease.
About Juvenile Batten Disease
Juvenile Batten disease (CLN3) is a rare, fatal, inherited disorder of the nervous system that typically begins in childhood. The first noticeable sign of juvenile Batten disease is often loss of vision, which begins between the ages of 5 and 10 years in previously healthy children and tends to worsen rapidly.
Other early signs are more subtle and include personality changes, behavioral problems, and slowed learning. Recurrent seizures typically begin around age 9 and motor problems appear in the early to late teenage years. At first, children may stumble or shuffle, followed by Parkinson-like symptoms followed by a complete decline in mobility.
Disrupted sleep and psychiatric conditions may appear at any time during the course of the disease. Some affected teenagers and young adults have cardiac problems that require pacemakers. Eventually, young adults become blind, bedridden, and physically and mentally incapacitated, requiring 24-hour care until premature death sometime between their teens and thirties.
Did you know?
Juvenile Batten disease is one of 7,000 rare diseases.
A rare disease is any disease, disorder, illness or condition affecting fewer than 200,000 people.
1 of 7,000
How you can help
The biggest way you can help is to donate. We work passionately to fund research, treatments and clinical trials that fight Batten disease, and it takes a village of help and support to advance these efforts.