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Science Lab

Connective Tissue Disorders and
The Connective Tissue Coalition

October 6, 2023

with Special Guests 

Jon Rodis

Disability Advocate, President and CEO of The Connective Tissue Coalition 

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Jon Rodis Headshot.jpg

Jon Rodis 

Jon Rodis has dedicated his life to spreading the word on Marfan, Ehlers-Danlos, Loeys-Dietz and many other related connective tissue conditions, doing whatever he can to improve the lives of those who are affected. Since becoming disabled from Marfan syndrome and related conditions in 2001, Jon has been helping people navigate the approval process for Social Security Disability as a National Disability and Medical Advocate for Rare Disorders.

His focus began with Marfan and has now spread to other connective tissue conditions, as well other rare disorders. These include the connective tissue disorders Marfan Syndrome, Ehlers-Danlos Syndrome, Loeys-Dietz; as well as Ataxia, a neurological condition; Sticklers, a heart condition; and Turners Syndrome, a developmental disorder. (You may find helpful links about these on our Resources page.) Jon helps provide support to people with multiple rare conditions, providing guidance on starting support groups and sharing contacts for more information on each particular condition.

Jon is the founder and co-leader of the Ehlers-Danlos and CTD New England/MA Support Group.  Jon is a National Disability and Medical Advocate for Rare Disorders and serves on the Winthrop Disability Commission. He is the Founder and Chair of the Physician Awareness Committee(s) for Marfan and Ehlers-Danlos Syndrome(s). In addition, he is a member of the Pathways to Trust Advisory Committee. Jon is the former President of the Massachusetts Chapter of the Marfan Foundation (2009-2022). For more information about Jon, be sure to visit his website.

Interviews and Videos:

-with Maria G. Pollack, RPT on Community and Leadership, 3/16/22

-Ehlers-Danlos Society recording, Applying for Disability, presentation co-led with Kathleen Kane, Esq. for the EDS Society Nashville Conference, 2019

-Marfan Foundation webinar, Social Security Disability, co-interview with Kathleen Kane, Esq. 2/28/18

-with Andra Stratton, Episode 6 – Two rare: fighting Marfan and Ehlers-Danlos, Rare in Common podcast, 8/30/18

-National Ataxia Foundation recording, Disability Decisions and Applying for SSDI, presentation co-led with Kathleen Kane, Esq. for the Annual Ataxia Conference, April 2016

-with Felice J. Freyer, Strict opioids laws hit chronic pain sufferers hard, The Boston Globe, 6/18/16 

Projects:

-draft reviewer of the report, Selected Heritable Disorders of Connective Tissue and Disability for the SSA by the National Academies of Sciences, Engineering, and Medicine, 2022

-contributor, Disjointed: Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders, Diana Jovin, editor. Hidden Stripes Publications, Inc. 2020

-author, Living with Marfan Syndrome: Part 1 Part 2, for the Ambry Genetics Blog, 2017

-author, “What might they be interested in learning from me?” Tips on medical advocacy, Stanford University Scope, 8/11/15

-contributor, Joint Hypermobility Handbook, Brad T. Tinkle, MD. Left Paw Press, LLC. 2010

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