About Our Founder: Jon Rodis
A pioneer in the field of advocacy for patients with connective tissue disorders, Jon Rodis has approached his own disability by helping others navigate their own.
Jonathan Rodis has dedicated his life to advocating for patients with, increasing awareness of, propelling research for, and building community around those affected by Marfan, Ehlers-Danlos, Loeys-Dietz and many other related connective tissue conditions. After receiving his B.S. in Management at Northeastern University, Jon achieved his M.B.A. in Executive Management at Suffolk University and gained over 20 years of experience in business management in consulting and senior management positions. He worked as a Business Development Manager/Consultant for MyKroWaters and then as an independent corporate consultant, until becoming permanently disabled in the Fall of 2001. However, this “ending” flourished as Jon’s beginning.
Early Advocacy: Creating Connections
A pioneer in the field of advocacy for patients with connective tissue disorders, Jon approached his own disability by helping others navigate their own. He came to create a website that offered support and resources for these misunderstood conditions, including a widely-circulated Disability Checklist to help people survive a complex system. He went on to write numerous articles that have been featured in several national and international foundations newsletters. President of the Marfan Foundation’s Massachusetts Chapter and Chair of the Chapter’s Physicians Awareness Committee, Jon went on to found the Ehlers-Danlos and CTD New England/Massachusetts Support Group, co-create its Facebook offshoot, and further co-administer a multiplicity of similar groups both on Facebook and across the web, serving both New England and nationally-recognized medical resource pages.
SSI/SSDI: Ensuring We Are Seen
Inspired by his own experiences with disability and the Social Security Administration, Jon has been helping people navigate the approval process for Social Security Disability as a National Disability and Medical Advocate for Rare Disorders since 2001. This decades-long effort culminated in a collaboration with researchers, specialists, and other leaders in the long-awaited Selected Heritable Disorders of Connective Tissue and Disability for the SSA. Published by the National Academies of Sciences, Engineering, and Medicine in 2022, this report will serve to help to ensure future SSI and SSDI applicants have their complex conditions better understood and their applications for assistance approved quickly.
Realizing a Dream: Creating CTC
Jon possesses an uncanny gift in the ability to connect to others, foster trust, and ultimately engage a shared passionate pursuit for understanding. Over the years, he has built relationships not only with patients but also with medical professionals, hospital administrators, researchers, politicians, and other leaders in industry and advocacy. These connections have culminated in the realization of his greatest aspiration, the Connective Tissue Coalition. Drawing on his leadership experience in the corporate sector and relationships built in healthcare and government, Jon has woven together a partnership of leaders, philanthropists, researchers, and fellow advocates to work in unison for a cure.
FULL CV
To read more about Jon, please download his CV: