The Rare hour with Christopher Velona

Listen as we recap the highs and the lows of 2019. From multiple seizures to shutting down an NFL raffle, Throwing out the first pitch at the Dodgers game, standing toe to toe with Dana White and the UFC, to creating the most awareness to date in the state of California with Assemblywoman Christy Smith. Please visit www.projectsebastian.org to make a donation today to save a child tomorrow.

Dr. Hussain, Director of Infantile Spasms Program and Associate Professor of Pediatrics at UCLA, Breaks down epilepsy in its rawest form. From newborn screenings, to why false positives are on the rise and the struggle to talk more about epilepsy as a whole.  Join us as Dr. Shaun Hussain brings not only his experience in the infantile spasms world but as it directly relates to his personal life. To find out more about what Dr. Sean Hussain is doing click here: www.InfantileSpasmsProject.org To donate today and support funding and research for infantile spasms click here: www.giving.ucla.edu/InfantileSpasms

Sebastians MRI...:( The rest of the years going forward. :)

Listen as Tracy Kirby discusses her role as one the Nations largest advocates in helping families affected by Batten disease find love, hope and support.

 A former police officer, Rodeo superstar, sheriff dispatcher and all-around guys guy, Shares his story. As we listen to him overcoming life's challenges through his own loss of sight, We are reminded that sometimes we just should not wait. Today's guest is almost blind and an advocate and independent contractor for a great company called eSight. Bill Bussey. To reach out to Bill for anything from eSight to coping with blindness call him at +1 (830) 388-0832

Why do we react so badly, Why do we run? Why are we crippled with fear?  Its ok ....It just is...

Todays episode...The amazing Dr. Jill Weimer! Jill Weimer, Ph.D. Associate Scientist and Senior Director of Therapeutic Development   Sanford Research Dr. Jill Weimer is a developmental neuroscientist and oversees the management and continued development of the translational arm of Sanford Research in Sioux Falls, South Dakota. She started at Sanford Research in 2009 as an assistant scientist, and her research program focuses on the molecular mechanisms mediating development of the cerebral cortex and how disruption in these processes can lead to a whole host of neural pediatric disorders, including Batten’s disease and Neurofibromatosis Type 1. Dr. Weimer grew up in north central Missouri and moved to upstate New York where she received her bachelor’s degree and Ph.D. in neuroscience from the University of Rochester. She completed her postdoctoral training in the Neuroscience Research Center at the University of North Carolina in Chapel Hill with a focus on developmental neuroscience. 

ENTREPRENEUR, WORLD TRAVELLER, DJ, CELEBRITY PODCASTER, & LIFE ENTHUSIAST AND SPECIAL NEEDS ADVOCATE. Vernon tells his story about helping his family from across the country while discovering his true calling.

Listen as my boys give all of us a holiday message!

Take a listen as this father of autistic child describes his life full of challenges, Depression, Marriage, Money, the current state of insurance with special needs ad how he is dealing with the loss of a very special person.

Today we talk to a sibling of a special needs kid. Gage, my son, goes deep into his relationship about his brother and talks candidly about the challenges of being a younger brother were anger and resentment played a part in the downfall of most of his relationships. Throughout his brothers challenges in life Gage found himself left out only to become one of sebastian‘s biggest supporters.

Dena bogrow •Listen as this special-needs mom tackles and 18-year-old suffering from several forms of autism. Attacking the day-to-day challenges of divorce, daily activities, home based business as well as finding the spiritual aspect to survive

Batten disease cln2 mom discusses the hardships of full-time care with full-time jobs

Getting to know your host, Christopher Velona

Greg Lopez~We discuss the everyday challenges of an Autistic adult and a father of 5 who is relentless in helping others in the batten community