Exploring Life & Business with Christopher Velona of Project Sebastian

Today we’d like to introduce you to Christopher Velona.

Hi Christopher, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today?
Project Sebastian was started by the father of a young boy who was misdiagnosed several times. Sebastian was diagnosed with epilepsy, then started losing his vision, then his cognitive abilities were slowly diminishing, and had 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 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 have joined their team of scientists to replicate the same practice but for Sebastian’s variant of Batten, disease CLN8. We are still waiting. Sebastian is slowly dying. Time is the enemy.

I thought we should be more proactive while we wait. So we created something that I felt was lacking in the rare disease space. Community support meetings. 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.

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.

Our foundation needed to evolve to be able to help others struggling with the day-to-day fears of such horrible diseases. 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.

You can check out our current schedule of meetings and times, in person or on Zoom, at projectsebastian.org. Please click on the meetings tab to find a meeting near you.

Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
I don’t think having a rare disease diagnosis could ever be a smooth road. It’s filled with so much emotion. You often lose sight of what is reality and what is hope. One of the common struggles has been that there will be treatment and a cure for your child. Although there are a few cures, there is still no cure for batten disease. Researchers are trying however their efforts have you shown very little in treatments and they do not work for all batten disease variance. This means what works for one variant will not work for another variant. And since this disease is genetic each variant (14 and counting) needs 14 different sets of treatments and cures. You can see how frustrating it is.

Great, so let’s talk business. Can you tell our readers more about what you do and what you think sets you apart from others?
Project Sebastian supports families who are affected by already diseases through our support groups. We offer in-person meetings as well as Zoom. Our main goal is to connect with other people that are affected by this space. That means patients, family, moms and dads, doctors, caregivers, paraprofessionals, siblings, or anyone that is affected by your person can connect with us.

How can people work with you, collaborate with you or support you?
You can support us by joining our meetings and telling everyone about how we serve this community. You can also donate at any time. We also like collaborating with other family foundations, research hospitals and pharmaceutical companies.

Contact Info:

• Website: www.projectsebastian.org
• Instagram: https://www.instagram.com/projectsebastian1/
• Facebook: https://www.facebook.com/projectsebi
• SoundCloud: https://open.spotify.com/show/1fOMt6XK4e8eZ5dPcM4Ujg