- RARE DISEASES AND DISORDERS affect 300 MILLION PEOPLE GLOBALLY. Familial Adenomatous Polyposis (FAP) affects 1 in 8000 people in the US. On Episode 58 of the Shining Brightly Podcast Show (links in the comments) titled “TURNING PAIN INTO PURPOSE” with the incredible childhood patient, survivor and advocate Jenny Jones. At age 9 Jenny was misdiagnosed and mistreated for life threatening illnesses by the healthcare system that led to distrust and depression. Through Life's a Polyp, she focuses on raising awareness and patient empowerment. She started the NORD FAP Research Fund in 2015 (links in the comments) and donates profits from Life's a Polyp Shop and her FAPChildren's Book - Life's a Polyp with Zeke and Katie. Come listen, download, share and review this episode of courage and strength.

Mentioned Resources

All Social Media handles are LifesaPolyp

Website: Life's a Polyp (lifesapolyp.com)

LinkedIn: https://www.linkedin.com/in/lifesapolyp/

Facebook: http://facebook.com/lifesapolyp

TikTok: https://www.tiktok.com/@lifesapolyp/

YouTube: https://youtube.com/lifesapolyp

Book: Life's a Polyp -ImagineWe Publishers

NORD FAP Research Fund:  Jenny Jones's fundraising page for National

Organization for Rare Disorders (rarediseases.org)

 About the guest - Jenny Jones is a Rare Disease Advocate for Familial Adenomatous Polyposis and Short Bowel Syndrome. Her surgeries related to FAP started at age 9 and after experiencing life threatening complications, she developed medical PTSD, lived with an ileostomy for 6 years before having it reversed and has survived 8 surgeries to date. Through Life's a Polyp, she focuses on raising awareness and patient empowerment. She started the NORD FAP Research Fund in 2015 and donates profits from Life's a Polyp Shop and her FAP Children's Book - Life's a Polyp with Zeke and Katie. 

About the Host:

Howard Brown is a best-selling author, award-winning international speaker, Silicon Valley entrepreneur, interfaith peacemaker, and a two-time stage IV cancer survivor. He is also a sought-after speaker and consultant for corporate businesses, nonprofits, congregations, and community groups. Howard has co-founded two social networks that were the first to connect religious communities around the world. He is a nationally known patient advocate and “cancer whisperer” to many families. Howard, his wife Lisa, and daughter Emily currently reside in Michigan, and his happy place is on the basketball court.

Website

Http://www.shiningbrightly.com

Social Media

Facebook - https://www.facebook.com/howard.brown.36

LinkedIn - https://wwwlinkedin.com/in/howardsbrown

Instagram -