The Rare hour with Christopher Velona
Summary: 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!
- Visit Website
- RSS
- Artist: Christopher Velona
- Copyright: Christopher Velona
Podcasts:
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 policy group. To reach out to David for more info you can email him at: dsross2013@gmail.com
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 has now conducted thousands of studies and rewarding patients and family caregivers with over $10 million dollars for their participation. Many have been recruited in person by West himself at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers non-rare as well as rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand Before launching Rare Patient Voice, Wes worked for healthcare market research firm Cantar health. He previously was a brand manager in marketing research manager at McCormick, the spice Company, and General Mills, working on Wheaties, total and kix cereals. He has a BA from the University of Pennsylvania and an MBA from the University of Chicago. I like to think of Wes, regardless of all his many accolades, as just another good dude and rare patient advocate. He is helping the community through one research study at a time. You can find Wes and the RPV team through these social media platforms: Website: https://rarepatientvoice.com Facebook: https://rarepatientvoice.com Insta: https://www.instagram.com/rarepatientvoice Linkedin: https://www.linkedin.com/company/rare-patient-voice
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 husband, and her kids live just outside of Phoenix. She is a writer, caregiver, and mom. Maybe most importantly, Megan is also an advocate for rare diseases and rare disease caregiving. She feeds her soul with her career and works at ANGEL AID CARES uplifting other caregivers. She is currently the chair of the Arizona Angioma Community Alliance and treasurer of the HOD Association in her “free” time. Follow her on Facebook, or Instagram, or check out her website! meganloden.com Facebook: https://www.facebook.com/megan.loden.5?ref=bookmarks Instagram: https://www.instagram.com/megan.loden/
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 syndrome diagnosis and colon removal surgery, I have an ostomy. An ostomy is a type of surgery that creates an opening in the abdomen that causes a change in the way stool exits the body. So I wear a prosthetic pouching system. You would never know it if I didn’t tell you. It's important to note that attenuated FAP is an autosomal dominant germline mutation. Dr. Henry T. Lynch, the founding father of hereditary cancer research, is credited with discovering AFAP. It's estimated that less than .03 percent of the global population are impacted by AFAP. I undergo routine endoscopic surveillance to monitor its progress. Last year I underwent successful pancreas-sparing duodenectomy resection surgery @ Stanford University Hospital. This surgery is directly related to AFAP. I've embraced this diagnosis from the onset and created an acronym for ADAPT: Attitude Determines the Ability for a Positive Transformation. Early detection is vital. I'm living proof. My purpose is to educate the world about AFAP as a virtual international live-case presentation for AFAP, continuing the legacy of Dr. Henry T. Lynch, on the importance of early detection in hopes of saving lives. Here are some groups that Dan collaborates with pertaining to attenuated FAP: http://fapgene.com/ https://coloncancerpreventionproject.org/ You can follow him on social media: Twitter: @dryshockley LinkedIn: Dan Dry Dock Shockley
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!
