Join the Fight Against Batten Disease
Together, We Can Find a Cure
Welcome to Batten Disease Research, where every step brings us closer to a cure. Join us in raising awareness and funds to combat this devastating disorder.
Our Journey and Commitment
Founded by families and friends affected by Batten disease, our organization is dedicated to supporting research and raising awareness. Since our inception, we have tirelessly worked to fund groundbreaking studies and provide hope to those impacted by this rare neurodegenerative disorder.
Understanding Batten Disease
Batten disease is a rare and fatal group of inherited neurological disorders that primarily affect children. It belongs to a class of disorders known as neuronal ceroid lipofuscinoses (NCLs), which are caused by mutations in specific genes that affect how cells dispose of waste. When these waste products build up, particularly in brain cells, it leads to progressive damage. Early symptoms often include vision loss, seizures, and cognitive decline. Over time, children may lose the ability to walk, talk, and eat, and the disease ultimately shortens life expectancy.
Because Batten disease is so rare, awareness and early diagnosis can be challenging. There is currently no cure, but supportive treatments can help manage symptoms and improve quality of life. Research is ongoing, including gene therapy and enzyme replacement studies, offering hope for future breakthroughs. Advocacy and fundraising play a vital role in accelerating research and supporting affected families.
Get Involved
Make a Donation
Your financial contributions are vital in supporting groundbreaking research. Every donation, regardless of size, brings us one step closer to finding a cure for Batten Disease.
Volunteer Opportunities
Join our team of dedicated volunteers who help make our fundraising events successful. Your time and skills can make a significant difference in our mission.
Event Participation
Participate in our annual events, such as the Batten Disease Research Golf Tournament, to support our cause while enjoying a day of fun and camaraderie.
Join Our Fight Against Batten Disease
Your support is crucial in our journey to find a cure for Batten disease. Whether through donations or participation in our fundraising events, every action makes a difference. Join us today and be a part of the solution.
Our Mission and Commitment
Batten Disease Research is a dedicated nonprofit organization founded by families and friends affected by Batten disease. We are committed to raising awareness and funds to support research efforts aimed at finding a cure for this devastating neurodegenerative disorder. Our mission is to uphold the rights of individuals with Neuronal Ceroid Lipofuscinoses and to foster a supportive community through annual events like our Golf Tournament. Join us in our mission to make a lasting impact until a cure is found.
