WHO WE ARE. WHY DO WE EXIST.
WE ARE HERE TO END RARE DISEASES
Rare diseases claims the lives of most children and teens.
Project Sebastian provides funding, support, hope, and awareness of the urgency to fund new treatments and to help all families affected by all rare diseases.
6-8k Rare Diseases
Less than 10 cures
Project Sebastian was started by a father of young boy who was mis-diagnosed several times. Sebastian was diagnosed with epilepsy, then started losing his vision , then his cognitive abilities were slowly diminishing and now has trouble walking and talking.
Finally, after thorough Genetic testing, we realized he actually has CLN8 a form of Batten Disease.
OUR VALUES. OUR EFFORTS.
OUR MISSION AND VISION
Compassion Education Advocacy
Project Sebastian provides support, hope, and awareness to help all families affected by rare diseases. We will provide psychotherapy, support groups, education, and resources to help you and advocate for your rare disease journey.
We envision a world where there is funding for treatment and cures to eradicate all rare diseases. We will support each other through our network of support groups, peer counselors, and individual therapists. We will address the day-to-day challenges to what the future looks like.
WHAT WE HAVE ACHIEVED SO FAR
Established a community of professionals, scientists, educators, caregivers and families to help you understand the challenges and daily struggles your dollars are put to work funding a variety of important projects.
June is Batten Disease awareness Month in California. Advocacy is a must! Without it there is no cure! We can help bring awareness!