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The Project Sebastian Podcast

The Project Sebastian Podcast

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The Project Sebastian Podcast

The Project Sebastian Podcast

The Project Sebastian Podcast

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About Us

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

Latest Episodes

"We knew nothing about this..." Kristen Gray

EWife, 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

68 MINAPR 19
Comments
"We knew nothing about this..." Kristen Gray

The Cystic fibrosis financial planner

EMeet 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

42 MINMAR 21
Comments
The Cystic fibrosis financial planner

Josh the super uncle!

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

34 MINMAR 5
Comments
Josh the super uncle!

Melissa and Haley~Heros

EMeet 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

48 MINFEB 19
Comments
Melissa and Haley~Heros

Accountability and Autism

EListen 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

51 MINFEB 12
Comments
Accountability and Autism

The year in review

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

34 MINJAN 1
Comments
The year in review

Breaking down Epilepsy with Dr. Shaun Hussain

EDr. 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

37 MIN2019 NOV 14
Comments
Breaking down Epilepsy with Dr. Shaun Hussain

The Update

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

19 MIN2019 JUL 16
Comments
The Update

BDSRA Family Liaison Tracy Kirby

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

23 MIN2019 JUN 19
Comments
BDSRA Family Liaison Tracy Kirby

Bill Bussey

EA 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

44 MIN2019 APR 29
Comments
Bill Bussey

Latest Episodes

"We knew nothing about this..." Kristen Gray

EWife, 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

68 MINAPR 19
Comments
"We knew nothing about this..." Kristen Gray

The Cystic fibrosis financial planner

EMeet 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

42 MINMAR 21
Comments
The Cystic fibrosis financial planner

Josh the super uncle!

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

34 MINMAR 5
Comments
Josh the super uncle!

Melissa and Haley~Heros

EMeet 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

48 MINFEB 19
Comments
Melissa and Haley~Heros

Accountability and Autism

EListen 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

51 MINFEB 12
Comments
Accountability and Autism

The year in review

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

34 MINJAN 1
Comments
The year in review

Breaking down Epilepsy with Dr. Shaun Hussain

EDr. 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

37 MIN2019 NOV 14
Comments
Breaking down Epilepsy with Dr. Shaun Hussain

The Update

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

19 MIN2019 JUL 16
Comments
The Update

BDSRA Family Liaison Tracy Kirby

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

23 MIN2019 JUN 19
Comments
BDSRA Family Liaison Tracy Kirby

Bill Bussey

EA 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

44 MIN2019 APR 29
Comments
Bill Bussey
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