The Rare hour with Christopher Velona

The Rare hour with Christopher Velona

By Christopher VelonaHealth & FitnessMental Health
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The Rare hour with Christopher Velona episodes

  • 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.

    9 min
  • 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 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 


    45 min
  • 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 her life as a grandparent.

    37 min
  • 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


    19 min
  • 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 world and gives a few important tips for parents just coming into this disease.

    To support Hannah and follow her on social media:

    Instagram: @hanna_cln8


    50 min
  • 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 tab and click on join now at 7 PM Pacific.

    7 min

About The Rare hour with Christopher Velona

From the publisher's feed

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.