Jon Rodis

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.