TOGETHER WE CAN FIGHT RARE DISEASES

Project Sebastian provides support, action, and awareness for all families affected by all rare diseases.

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Rare diseases claim the lives of most children and teens. While most people wait for a cure they have nowhere to turn. We offer a community group support system that can help you deal with so many emotions, questions, and uncertainty. We realize that connecting with other families is essential to this journey. We will provide you with group meetings and counseling so that you can connect with others who are struggling like you.

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So how did this all begin...

Project Sebastian was started by a father of a young boy who was misdiagnosed several times. Sebastian was initially diagnosed with epilepsy. Then over time, he began to lose his vision and cognitive abilities and had trouble speaking, walking, or even using utensils. Finally, after thorough genetic testing, we realized he actually had CLN8, a form of Batten disease

Compassion Education Advocacy

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Project Sebastian provides psychotherapy, support groups, education, and resources to all families suffering from a rare disease. 

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We envision a world with funding for treatment and cures to eradicate all diseases.

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Project Sebastian will support each other through our network of peer counselors, support groups, and individualized therapists. We will address the day-to-day challenges and help get through them.