Rare Disease Day February 28th 2023
Join us this month of February we celebrate Rare Disease Day, February 28, 2023. Project Sebastian is dedicated to helping for families suffering from rare disease. My son sebastian was diagnosed with Batten disease, CLN8 in 2012. He is ultra rare as he is the only living child with a split gene mutation of this disease. Most children with batten disease do not live past their teens however, sebastian is a fighter. He has shown our family what it takes to continue the fight. From these lessons, we realize that we can help other families with Rare disease through our support groups. We realize that we need to come together as a whole, a whole rare disease family. With our support groups, we help others cope with living with rare, and now it takes a toll on the entire family. Project Sebastian is here for anyone that is suffering from a rare disease, or has a connection to it. Through your generous donations, we continue on with our mission, which is to provide psychotherapy, support, education, and resources to all rare disease families. Please visit projectsebastian.org for more information on how you can get involved or find a meeting.