The Project Sebastian Podcast show

The Project Sebastian Podcast

Summary: Bringing special needs families together. Real talk about How our special needs families deal with the day to day challenges, struggles, and some of the triumphs along the way. Support this podcast: https://anchor.fm/christopher-velona/support

Join Now to Subscribe to this Podcast
  • Visit Website
  • RSS
  • Artist: The Project Sebastian Podcast
  • Copyright: The Project Sebastian Podcast

Podcasts:

 "We knew nothing about this..." Kristen Gray | File Type: audio/x-m4a | Duration: 4112

Wife, mother, advocate, and businesswoman, Kristen Gray shares her story about the heartbreaking battle into the unknown...Batten Disease. "In my wildest of wildest fears did I ever think what it ultimately would be"  From normalcy to misdiagnosis to MRIs, Kristen Finds strength and power in her partner.  Kristen and Gordon Gray have paved the way for many doctors, physicians and pharmaceutical companies to start thinking outside the box, as both of their children fight for their lives.  Gordon Gray, a Hollywood producer, turned childhood disease advocate was able to rally some of his Hollywood friends to create an awareness campaign that catapulted Batten disease research. Truly a power couple.  There are no treatment options or cure at this time for any variant of Batten disease. It will leave your children blind, immobile and cognitively impaired, and ultimately, dead before a full life of normalcy. Kristen reveals the one hard lesson learned..." research, research, research! Listen on as the co-founder of Charlotte and Gwenyth Gray Foundation Refuses to listen to the old ways as she and her husband move science forward into the Gene therapy space to help their girls and many others in the process. To find out more about the Charlotte and Gwyneth Gray Foundation please visit: http://www.curebatten.org/ http://www.thegrayacademy.org/ Facebook: Curebatten Thegrayacdemy Instagram: @curebatten To reach Kristen directly: graygirlsfoundation@gmail.com --- Support this podcast: https://anchor.fm/christopher-velona/support

 The Cystic fibrosis financial planner | File Type: audio/x-m4a | Duration: 2566

Meet Steven Lee. A Man that has three full-time jobs. Father, husband and brings community and awareness through his financial services. But let's talk about why Stephen is on the project Sebastian podcast. The father of two children Rebecca 8 and Sampson 5, Steven works from home while taking care of his two children. One of which requires treatments twice a day for breathing to counteract the cystic fibrosis. Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices. These secreted fluids are normally thin and slippery. But in people with CF, a defective gene causes the secretions to become sticky and thick. Instead of acting as lubricants, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas. Although cystic fibrosis is progressive and requires daily care, people with CF are usually able to attend school and work. They often have a better quality of life than people with CF had in previous decades. Improvements in screening and treatments mean that people with CF now may live into their mid- to late 30s or 40s, and some are living into their 50s. With a desire to make the best of his life he puts his family first and devours any ounce of information on how to help others in the CF world. Financial Planning Research site: www.georgejamesassociates.com LinkedIn profile: https://www.linkedin.com/in/stevenleegja Twitter handle: @sleegja YouTube link: GJA Channel Cystic Fibrosis Foundation: https://www.cff.org/ Extra Life Team Site: https://www.extra-life.org/team/51066 Also, you can subscribe to Steves financial planning research blog and check out my SSRN author page and reach out to Steven below as well: Steven Lee Executive Vice President George James & Associates t 951.888.0734 --- Support this podcast: https://anchor.fm/christopher-velona/support

 Lucy Faith and her Army | File Type: audio/x-m4a | Duration: 3600

The journey of one family struggles with not one but two diagnosed children with batten disease. listen about Ollie and Amelia's fight for the right to get life-saving therapies as Lucy and Mike Faith take on the English government! From healthy children to seizures and a meeting with Prince Harry, This brave family kept fighting to save their children's lives, eventually getting Enzyme Replacement therapy. A first-ever feat in the UK.  Along with an army of England behind them, this family broke through every wall in front of them to get Ollie the best treatment possible. Then Amelia was diagnosed positive as well...  "As parents, we have found it a constant struggle with doctors and other health professionals to get Ollie and Amelia the best care. We will arrive at hospitals in emergency situations and doctors don’t know what to do as the disease is so rare they have never seen another child with this condition. We end up having to tell the doctors how to treat our own child, as we are the ones who have done the research, we are the ones living the nightmare." One family. Two children with Battens Disease. To reach out to Lucy and help her in the fight to save her children visit: olliesarmy.co.uk Facebook: @olliesarmybattlingagainstbattens Twitter: @olliebobsarmy --- Support this podcast: https://anchor.fm/christopher-velona/support

 Josh the super uncle! | File Type: audio/x-m4a | Duration: 2045

Joshua Ervasti, otherwise known as a super uncle. Listen today as Josh tells the story of one courageous little girl battling brain cancer and the sport that spiked a movement.  Maddie Cunningham had Medulloblastoma at the age of three. This Horrible type of brain cancer attacks the cerebellum creating a very difficult life of cognitive loss and fine motor skills as well as balance. Through a loving family and a super uncle, they created Maddie Cunningham's classic volleyball Challenge to bring awareness and funds to help all children suffering from medulloblastoma. Maddie has been in remission for some time and is 17!  To find out more and to contact Josh, please visit: http://www.maddysclassicvolleyball.com/ Facebook: http://www.facebook.com/MaddysClassicVolleyball Jervasti0824@gmail.com --- Support this podcast: https://anchor.fm/christopher-velona/support

 Melissa and Haley~Heros | File Type: audio/x-m4a | Duration: 2939

Meet Melissa Pollman: Mom, wife, entrepreneur, advocate and holds an MBA in Management. Listen in as we hear this family gal's story from Oregon about her daughter Haley, and the change that would come from a horrible diagnosis of Batten disease CLN1. From the business owner to Batten advocate she not only created a foundation but took on TEDx speaker series earlier this year to raise more awareness to find a cure. You can follow Melissa on these social media platforms: Facebook: Melissa Pollman                     Haley Heros Foundation Instagram: https://www.instagram.com/haleysheroesfoundation/ Twitter: https://twitter.com/haleysheroes Tedx: https://www.ted.com/talks/melissa_pollman_vision_without_sight?fbclid=IwAR1zOreo11BYufd1uZujKiVIJU5FBFk70UQpeksp4lWM1b7fO5WNkT8IlKk https://haleysheroesfoundation.org/ --- Support this podcast: https://anchor.fm/christopher-velona/support

 Accountability and Autism | File Type: audio/x-m4a | Duration: 3086

Listen today as our guest Jessica Calhoun keeps it real through accountability, weight loss, sobriety and motivating others through the truth and obstacle courses! You can follow Jessica on social media!!  Instagram: www.instagram.com/jessicalhoun --- Support this podcast: https://anchor.fm/christopher-velona/support

 The year in review | File Type: audio/x-m4a | Duration: 2085

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. --- Support this podcast: https://anchor.fm/christopher-velona/support

 Breaking down Epilepsy with Dr. Shaun Hussain | File Type: audio/x-m4a | Duration: 2244

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 --- Support this podcast: https://anchor.fm/christopher-velona/support

 The Update | File Type: audio/x-m4a | Duration: 1170

Sebastians MRI...:( The rest of the years going forward. :) --- Support this podcast: https://anchor.fm/christopher-velona/support

 BDSRA Family Liaison Tracy Kirby | File Type: audio/x-m4a | Duration: 1412

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. --- Support this podcast: https://anchor.fm/christopher-velona/support

 Bill Bussey | File Type: audio/x-m4a | Duration: 2689

 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 --- Support this podcast: https://anchor.fm/christopher-velona/support

 In my opinion | File Type: audio/x-m4a | Duration: 631

Why do we react so badly, Why do we run? Why are we crippled with fear?  Its ok ....It just is... --- Support this podcast: https://anchor.fm/christopher-velona/support

 Episode 12 | File Type: audio/x-m4a | Duration: 2563

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.  --- Support this podcast: https://anchor.fm/christopher-velona/support

 VERNON MAXXWELL | File Type: audio/x-m4a | Duration: 2301

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. --- Support this podcast: https://anchor.fm/christopher-velona/support

 Holiday message with Sebastian and Gage | File Type: audio/x-m4a | Duration: 493

Listen as my boys give all of us a holiday message! --- Support this podcast: https://anchor.fm/christopher-velona/support

Comments

Login or signup comment.