The Rare hour with Christopher Velona

By Christopher Velona

Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a ... more

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FAQs about The Rare hour with Christopher Velona:

How many episodes does The Rare hour with Christopher Velona have?

The podcast currently has 47 episodes available.

The Rare hour with Christopher Velona episodes:

February 19, 2020 Melissa and Haley~Heros
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/
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49min
February 11, 2020 Accountability and Autism
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
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52min
January 01, 2020 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.
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35min
November 14, 2019 Breaking down Epilepsy with Dr. Shaun Hussain
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
...more
38min
July 16, 2019 The Update
Sebastians MRI...:(
The rest of the years going forward. :)
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20min
June 18, 2019 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.
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24min
April 28, 2019 Bill Bussey
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
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45min
April 02, 2019 In my opinion
Why do we react so badly, Why do we run? Why are we crippled with fear?
Its ok ....It just is...
...more
10min
February 28, 2019 Episode 12
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.
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43min
January 18, 2019 VERNON MAXXWELL
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.
...more
38min

FAQs about The Rare hour with Christopher Velona:

How many episodes does The Rare hour with Christopher Velona have?

The podcast currently has 47 episodes available.