WHO WE ARE. WHY DO WE EXIST.
A LITTLE ABOUT US
Project Sebastian was started by the father of a young boy who was misdiagnosed in the beginning of their journey. Sebastian was diagnosed with epilepsy, then started losing his vision, then his cognitive abilities were slowly diminishing, and had trouble walking and talking. The seizures were becoming more frequent as well. "This is not just epilepsy, there is something else wrong with him," said the father. Finally, after thorough Genetic testing, we realized he actually has CLN8 a variant 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 of determination for a cure.
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 did join their team of scientists to replicate the same practice but for Sebastian's variant of Batten disease CLN8. Unfortunately, we have been unsuccessful in getting pharmaceutical companies, research hospitals, and studies completed due to the fact that Sebastian is ultra-rare. He is the only known human currently with a split gene mutation of batten disease CLN8. We are currently trying to get Sebastian onto other approved drug therapies as we now know that gene therapy and other treatments are not available for him at this time and may never happen. We are still waiting. Sebastian is slowly dying. Time is the enemy.
OUR VALUES. OUR PASSION.
OUR MISSION & VISION
Our Mission statement is straightforward. Project Sebastian is a hub of information, education, and compassion. We will devote the time and energy necessary to educate, advocate, and provide support to fight all rare diseases. We also feel very strongly about 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 want you to join us in our crusade in finding a cure for all rare diseases. This is the heart and soul of this charity. We are helping those in need who do not know how or what to do. Neurological disorders such as Epilepsy and Batten Disease, and many others, have greatly affected our youth 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 emotions through our support groups.
A few short months ago, there was no actual path. However, we have partnered up with multiple sources of incredible doctors and other charitable networks to develop new support systems for many diseases.
Please join us to find out how you can help.
Email email@example.com or call 661-414-4856 today.