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Special Topic:
"Complicated" Part 2

April 30, 2024

with Special Guests 

Donna Sullivan ( Consulting Producer Director of film, "Complicated," ) 

Jon Rodis (President, CEO of Connective Tissue Coalition)

You can stream FREE episodes on Spotify, Apple Podcasts and YouTube

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Donna Sulliva 
(Consulting Producer of film "Complicated" )

Donna is a proud mom of three kids living with EDS, and a pioneering advocate raising awareness of the needs of children and families living with Ehlers-Danlos Syndrome, complex pain conditions and rare disease. She is a board member The Connective Tissue Coalition  as well as The Coalition Against Pediatric Pain and Merlin’s Kids Service Dogs and is a member of The AHEAD Coalition for The Ehlers-Danlos Society. Donna serves as the Director of Patient Advocacy for Pathways To Trust, a non-profit that educates healthcare providers about the unmet needs of marginalized patient populations. She is also the consulting producer on the documentary film, Complicated, an exploration of the EDS experience currently in production by Open Eye Pictures.

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Jon Rodis
(President and CEO of Connective Tissue Coalition )

Jonathan Rodis, B.S. in Management at Northeastern University, M.B.A. in Executive Management at Suffolk University. Jon is the founder, CEO, and President of the Connective Tissue Coalition and has over 20 years of experience in business management/consulting and in senior management positions. He worked as a Business Development Manager/Consultant until becoming permanently disabled. Since that time, Jon has been involved with several Marfan, Ehlers-Danlos, and related disorder awareness, support, and research initiatives. Among them, Jon created a website on his experiences with Marfans, wrote a Disability Checklist, and authored articles that have been featured in several national and international foundations newsletters. As a disability advocate, Jon has helped many people get approved for SSI and SSDI over the last 18 years. He is formerly the President of the Massachusetts Chapter of the Marfan Foundation (2009-2022). Jon also founded and co-heads the Ehlers-Danlos New England/Massachusetts Support Group and its most recent initiative, the Ehlers-Danlos Physician Awareness Committee. Jon has dedicated his life to spreading the word on Marfans, Ehlers-Danlos, Loeys-Dietz, and many other related connective tissue disorders doing whatever he can to improve the lives of those who are affected.

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