prader-willi syndrome

When Maria Picone’s daughter was diagnosed with Prader-Willi Syndrome (PWS), she turned to the internet for answers.  

What she found was an online community of caregivers sharing their experiences with PWS, giving her comfort and direction with what to do about her daughter’s rare disease. It also spurred her and her husband to create TREND Community, an online platform for caregivers of rare diseases to not only share their experiences, but also make positive contributions to scientific literature.  

Join us as we discuss the philosophy of TREND Community, how it transforms general discussions into real-world clinical research, how collaboration drives their progress, what’s next for TREND, and what you can do to help advance their mission.   

 
Show Notes

Trend Community - Impact Through Insights

Trend Community Report on Identifying Mental Health Challenges Experienced by Caregivers in Rare Disease Communities: A Social Media Analysis

Charles River | Rare Disease

The Disruptors: Innovation in Drug Discovery

Hello and welcome to episode 68 of The High Strangeness podcast! Today Gav and I will be discussing people who eat non-food items or food in large quantities..we'll be chatting about Pica disorder, Prader-willi syndrome and much more, so put down that spoonful of cat litter and join us!

FOXIES FANTASTIC FABRICATIONS:
https://www.facebook.com/profile.php?id=100057588545294

THE PODCAST ON HAUNTED HILL:
https://podcasts.apple.com/gb/podcast/the-podcast-on-haunted-hill/id1038613969

Today our guest is former MLB manager, Clint Hurdle. Following a ten-year playing career in the big leagues (Kansas City Royals, Cincinnati Reds, New York Mets and St. Louis Cardinals), Clint successfully managed the Colorado Rockies (2002-2009) and Pittsburgh Pirates (2011-2019). Clint was the 2013 National League Manager of the Year. Hurdle describes the pressure of being on the cover of Sports Illustrated at the age of 20 and his turning point at age 40 to follow Jesus Christ.  He details his battle with alcoholism and overcoming both personal and professional adversity—including being fired three times, two failed marriages and raising a daughter with special needs (Prader-Willi Syndrome). You will be encouraged by Clint’s authenticity and his desire to impact others as a “hope-broker.” Be sure to subscribe to the Post Game with Paul Golden podcast wherever you listen to podcasts.

www.clinthurdle.com 
www.paulgolden.org

For more information and to financially support the podcast, go to www.PaulGolden.org