Batten disease claims the lives of most children and teens carrying this disease.
Our mission is to raise awareness and money through Project Sebastian for life-saving Gene Therapy Replacement. This therapy can save our son Sebastian's life and many others. Our goal is to raise $3.5 million. Help us get there.
We have partnered up with the world’s leading researchers studying gene transfer approaches to pediatric orphan diseases. This groundbreaking and innovative approaches allow us and others a real chance to eradicate this disease. A, first of its kind, a clinical trial has begun at Nationwide Children’s Hospital to evaluate this investigative treatment, providing hope for children with Batten disease all around the world. Helping others and sharing this info is a must!