The Rare hour with Christopher Velona

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 thoroughly examining medical records to understand every decision made during labor and delivery. Througho...

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 times a month and is working with Eurordis in a mental health partnership network and social polic...

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.

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 opinions and research studies. This year the company celebrates its 10th anniversary. Rare Patient Voice h...

In this episode, we break down all of the sponsors and the fun day for the second, annual Rare warrior 5 x 5 challenge

Do better, be better!

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 https://www.facebook.com/projectsebi ~ FaceBook

Today I talk about why am angry in this rare disease space.

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!

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 show! Megan is a mom to twins — identical 18-year-old girls — and a 14-year- old son. She, her husb...

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.

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 w/hereditary colon cancer syndrome, attenuated FAP, in 2012. As a result of hereditary colon cancer syndro...

Today we celebrate a new milestone for sebastian… His 19th birthday!

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 her life as a grandparent.

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

Well, there are some good days and then there are some bad days here in rare diseases. Here is one amazing day!

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 world and gives a few important tips for parents just coming into this disease. To support Hannah and follo...

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 tab and click on join now at 7 PM Pacific.

Mostly random thoughts that I am struggling with at this very moment!

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 same milestones as his twin sister. We then began a journey to find answers to help our son. She began...

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 his greatest joy by including the special needs and rare disease community inside his dojo. To get a ho...

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 to the attention of the casual listener what is like in dealing with their rare child, friend, sibling,...

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 loving siblings.  After moving to Washington and marrying her husband, Casey, they were blessed wit...

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 this profession...To help others. You can find Dr. Drew on these platforms and of course at his website D...

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 is your purpose…?