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 child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!
Episodes
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Gina Mundy~ "Life Changing author."
Gina Mundy is an attorney specializing in childbirth cases. For over 20 years, her focus has been investigating and analyzing mistakes that arise during labor and delivery. She has spent countless hours meticulously scrutinizing childbirth cases, conducting interviews with delivery teams, and...
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Mental Health support has a new face.
David has a rare disease called Cowden Syndrome and is from the U.K. He set up a rare disease men's mental health group three and a half years ago to give men a chance to share their experiences and listen to others going through similar experiences. He has currently increased the meetings to two...
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Nasty People in Rare...What gives?
On today's Rare Thoughts, I give my opinion about the summer conferences so far. Also, I discuss why people are so nasty in Rare diseases.
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Wes Michael~ Giving families the opportunity where it is most needed. Their opinion.
Welcome to our summer series. You probably noticed a change in the intro right? Lol. We believe summer should be full of fun, good vibes, and great tunes! Was Michael A founded Rare Patient Voice in 2013 to give patients and family caregivers with rare diseases, the opportunity to voice their...
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Rare thoughts on the #Rarewarrior 5 x 5 challenge!
In this episode, we break down all of the sponsors and the fun day for the second, annual Rare warrior 5 x 5 challenge
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Conference Season
Do better, be better!
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End of 2022 Re Cap Show
Join us, as we recap the best in the worst of 2022 through Project Sebastian, CSG, relationships, addiction, mental health, family, and the difficulties of living in rare. You can find us on Social Media here: https://www.instagram.com/projectsebastian1/ ~INSTA…
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I AM ANGRY
Today I talk about why am angry in this rare disease space.
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Rare Thoughts...First 2 weeks of september.
The first two weeks of September or very painful and challenging. However, what does not kill you makes you stronger right? Thank God for my friends at global genes. The rest of the month should be easy!
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How social media helps awareness with Megan Loden
Megan is changing how rare disease families interact. With the help of social media, Megan's spin on the day-to-day lives of rare diseases has us laughing a bit more. You can see in her Instagram reels as she tells the truth through deadpan humor. You will like this creator for sure on today's...
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Rare Thoughts/ Stop wasting time!
Stop wasting time and waiting on others to help you or your children. It's time for you and others to start moving this needle and start helping other children and families with support.
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Drydocked- How early detection in a routine exam saved his life and his rare life began
In today's episode, we chat with a gentleman who was diagnosed with a rare disease in mid-life!! Meet Dan Dry-Dock Shockley (Veteran) Retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10-year rare disease virtual international live-case presentation. Diagnosed...
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Rare Thoughts...The Birthday one.
Today we celebrate a new milestone for sebastian… His 19th birthday!
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Grandma in rare
On today's show, we have my Mom, Michelle Velona. She is a grandmother, mother, widow, friend, and rare disease advocate. During her lifetime of service work, just like all families, she had no idea what type of grandma she was to be. Listen as she tells her story of how a rare diagnosis changed...
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The Batten update(reality) #08
Just a quick check-in to let you know what's going on with Sebastian and his Batten disease… This episode just seemed to roll off my tongue. I finally was able to put my thoughts into a microphone without having to worry about what you think. I think the therapy is helping LOL
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Today was a good day...
Well, there are some good days and then there are some bad days here in rare diseases. Here is one amazing day!
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When the promise of Gene therapy does not apply to your child
On today's show, our guest is Batten CLN8's dad, Muhammad Dawood, who talks with us about Hannah, his terminally ill child. From a normal life to a nightmare of testing to broken hopes for therapy. Muhammed explains what it was like, what happened and what is like now in today's rare disease…
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Rare thoughts... Frustration
Recorded this episode right before my first 5K fundraiser. You can hear the anger, resentment, and frustration all around me. Tonight more than ever I need my rare disease support group! To join us for our rare disease support group on Zoom head over to projectsebastian.org and hit the meetings…
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Rare thoughts
Mostly random thoughts that I am struggling with at this very moment!
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We all want CURES!
Today's guest: Monica Dudley-Weldon Her son was the 6th child diagnosed in the world! In November of 2012, Monica's twin son, Beckett, was the first to be diagnosed at Texas Children's Genetics Clinic with the gene mutation SYNGAP1. When Beckett was 4 months old, we noticed he was not meeting the...
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The Special Needs Sensei
Meet sensei Richard Dolan, a 3rd-degree blackbelt in the art of Kenpo. Rich is a resident of Santa Clarita Valley California and gave up his radio career to be an instructor in the self-defense arena. Along that way, he realized that making people happy was his calling. Listen on as he describes...
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Welcome
Welcome to a new era, and a new show. On the Rare hour with Christopher Velona, we will share people's struggles, stories and discuss relatable topics in the rare disease communities. This will be a part interview and part topic-based show about all things Rare. Special needs families will bring…
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EFFIE PARKS
I recorded the show prior to finding the perfect name for this podcast. The new name of the show is "The Rare Hour" with Christopher Velona. I dedicate this new beginning to our premier guest… Mrs. Effie Parks Effie Parks was born in the magical land of Montana, where she was raised with her 12...
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Dr. Drew
Dr. Drew tells all... "It's the leadership... that's the problem..." Listen on as Dr. Drew talks about his early days from humble beginnings as a doctor to create a new space in the addiction recovery arena. From doctor to national TV host to Podcaster, Drew has never forgotten why he got into…
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New Show.
We are changing things up around here. We have a new podcast and an entirely new show. Welcome to CSG consultants. Where we create time for you. This podcast was created around the idea of helping others connect. The new show is titled connections with purpose. Give us a listen and tell us what…
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"We knew nothing about this..." Kristen Gray
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...
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The Cystic fibrosis financial planner
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…
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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...
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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…
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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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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...
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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…
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The Update
Sebastians MRI...:( The rest of the years going forward. :)
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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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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...
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In my opinion
Why do we react so badly, Why do we run? Why are we crippled with fear? Its ok ....It just is...
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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...
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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.
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Holiday message with Sebastian and Gage
Listen as my boys give all of us a holiday message!
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John Montazeri: Father, Advocate, Businessman
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.
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Gage
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...
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Dena
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
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Vanessa severance
Batten disease cln2 mom discusses the hardships of full-time care with full-time jobs
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Welcome
Getting to know your host, Christopher Velona
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Batten disease...
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
About this show
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 child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!
Hosted by
Christopher Velona