Sebastian wearing Project Sebastian T Shirt

OUR STORY

Education

Compassion

Advocacy

WHO WE ARE. WHY DO WE EXIST.

A LITTLE ABOUT US

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. He was told that “this disease eventually runs its course killing the patient. There is no cure. No hope. You should spend as much time with your son as you can...” What parent would listen? With nothing left but HOPE, Christopher Velona began a new journey....one of determination for a cure.

 
 
Iron Man and Captain America Fancy Dress

They began to search all over the world for anyone doing anything. They came across another family that has pioneered Gene Therapy replacement. These clinical trials have shown success within the CLN6 variant. We have joined their team of scientists to replicate the same trial but for Sebastian's variant of Batten disease CLN8. We are still waiting. Sebastian is slowly dying. Time is the enemy.

Sebastian with pet Dog
Sebastian wearing T shirt

OUR VALUES. OUR PASSION.

OUR MISSION & VISION

Our Mission statement is simple and clear. Project Sebastian was created to be a hub of information, education, and compassion. We will devote the time and energy necessary to educate, advocate, provide support to fight all rare diseases. We also feel very strongly in connecting those in need that are suffering from all rare diseases. We will provide support groups for those wanting to discuss, share and connect with others going through the rare disease journey.

We would like you to join us in our crusade in finding a cure for all rare diseases. This is the heart and soul of this charity. Helping those in need when they don’t know how or what to do. Neurological disorders such as Epilepsy and Batten Disease, and many others,  have greatly affected our youth of today, resulting in death. We hope you can join us to learn about a great organization such as Project Sebastian as we tackle such incredible diseases.

A few short months ago there was no real path. However, today we have partnered up with multiple sources of incredible doctors and other charitable networks to come up with a new possible cure for many diseases.

Please join us to find out how you can help.

Email info@projectsebastian.org or call 661-414-4856 today.