Read about our founders and leaders, and then scroll further to read the history of our EDS and CTD New England/MA Group.
Leaders
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). Jon is the Founder, CEO, and President of the Connective Tissue Coalition, an organization that drives research and helps individuals with connective tissue disorders. Learn more about CTC and their mission here; 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
Diana Cleaveland joined the EDS and CTD New England/MA Support Group in 2011. Two years later, Jon Rodis approached her to join him in being co-leader for the group. In addition, she joined the Physicians Awareness Committee in 2012, and attained Massachusetts Proclamations for Ehlers-Danlos Awareness Month (2012 to 2022).
Diana has created four online Facebook groups: Ehlers-Danlos Outside of the Box (an international research support group), Ehlers-Danlos Proclamations (a support group for getting EDS Awareness Months in all 50 states), Ehlers-Danlos, Marfan and Related CTDs New England/MA Support Group, and Ehlers-Danlos Initiatives, Surveys and United Voices: The World Speaks. As part of the work with the in-person group, Diana created a newsletter, a survey, and recorded webinars for the group support meetings. The latter were shared with patients who were not well enough to attend, and for physicians engaging in dialogues.
Diana is an Ehlers-Danlos patient and a former musician known as Oria Blue (http://blackblocks.org); she lives in Swampscott, MA.
Brenda Shisslak was born in Boston in 1958, the fifth of ten children. After several years working in business, she went into the healthcare field, earning a degree in Radiology Sciences and working as a radiology technologist in Florida. When she relocated to Boston with a husband and newborn, there were no radiology jobs available. She began a career at Massachusetts Trial Court in the Civil Clerk’s Office at Suffolk Superior Court, advancing to an Assistant Clerk Magistrate. She has also returned to healthcare, working part-time in the Emergency Room at Beth Israel Leahy Health-Needham.
Her true inspiration is her Mom, who managed to bring up ten successful children, maintain a household, and at one point worked a part-time job while Brenda and her siblings were all attending school.
Brenda is similarly dedicated to her family and community. Her advocacy work includes co-leading the Ehlers-Danlos and CTD New England/MA Support Group and serving as co-admin in its multiple related Facebook groups. She is the Patient Advocate for the Medical Advisory Board for the North American Thrombosis Foundation (NATF). When she’s not caring for patients or working in the Courts, she enjoys spending time with her daughter, shopping and hanging out.
She lives in Westwood with her daughter Abigail and their three cats Lily, Daniela, and Kodu.
Abigail “Abby” Shisslak was diagnosed with Narcolepsy in 2015, and then Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome in 2016. She and her supportive mother, Brenda, met with Jon Rodis and Diana Cleaveland shortly after that. She has aided in advocacy and awareness efforts, as well as organizing local support group meetings since then.
Abby has served with various Miss Massachusetts and Miss New England titles until 2020 and used her chronic, invisible illnesses as her awareness platforms. She brought advocacy to a national stage and won Division Spokesmodel for her speech about invisible illnesses. She also placed in the Top 5 of the Miss category each year, and placed Top 5 twice for a triple division title thanks to her volunteerism and activism.
Currently, Abby organizes virtual meetings on Zoom for the Ehlers-Danlos and CTD New England/MA Support Group, admins all accompanying Facebook groups, and serves as their bonafide tech support person. In her spare time, she excels at video gaming, writing, reading, growing and maintaining her garden, cooking, household accounting, and raising little kittens. She has a mind for big things and aspires to become an astrobiologist. That same large-picture thinking gives her hope for the future of connective tissue disorders and their treatment.
Pilar Goldstein-Dea, like many of us, joined the EDS and CTD New England/MA Group in hopes of finding camaraderie and improved knowledge after her diagnosis with hEDS in 2016. A former hospice grief counselor, Pilar put her training to work for many years as a volunteer admin for two EDS & CTDs Over 40 Facebook groups. Currently, she is a moderator for the Western MA EDS & CTD Support Group. These groups created friendships and connections that sparked new life into her disability, furthered her understanding of connective tissue disorders, led to additional diagnoses of multiple common comorbid conditions, which in turn she’s used to further others’ knowledge, awareness, self-advocacy, and diagnoses. The cycle of support is indeed a powerful one! Today she is principal of Laughing Pebble Studio where she fills her days with art, design, writing, and social media management. She lives in Easthampton, MA with her son and their emotional support house-tiger, Marley.
Please direct any questions or suggestions you may have about this website to pilarkristine@laughingpebblestudio.com, and let’s further that cycle of support together.
Group History
After a career spanning 20 years in business management and consulting, Jon Rodis had become permanently disabled with Marfan Syndrome in the Fall of 2001. But just a year later, he’d become a National Disability and Medical Advocate for Rare Disorders, starting with the Marfan Foundation. And he’d never heard of Ehlers-Danlos Syndrome until a fellow Marf introduced him to it, and subsequently he was diagnosed with hypermobile EDS, too. Years followed, and by 2009 he’d become the President of Massachusetts chapter Marfan Foundation, holding in-person support groups and increasing his advocacy work.
Is it something that can open a door to an answer, or a cure? Create a better quality of life? I’ll work with anyone to make real change happen.
Jon Rodis
After his own diagnosis, Jon had the contact information for just 17 people locally with EDS through his advocacy work. But he sensed a need in the community for an all-CTD-inclusive support group, and decided to begin the EDS and CTD New England/MA Group in June of 2010. He encouraged the 17 EDSers to spread the word about the new group, and they sure did! For while his Marfan Foundation group tended to average about 7 people in attendance throughout 2009, that first EDS-inclusive group in 2010 saw 30 people attend! Ultimately, he was glad he’d combined the conditions. He recalled the Marfs were “blown away.” “You mean you have these symptoms, too?!” People were amazed by how similar the conditions were– so much so that they determined by the second meeting that they should develop a medical recommendations list. Up to that point, there’d been no database, no doctor recommendations, and no way for primary care physicians to know who to refer their patients to.
This kind of advocacy was the work that Diana Cleaveland would ultimately carry even further, first authoring a survey that documented the many common comorbidities of CTDs. She then established an affiliated Facebook group in order to amplify the reach of the survey and subsequently to offer its findings. As well, she started an online version of the in-person New England group so that people might have another way to connect. Today we lovingly call that Facebook presence “The Eagle Group.” Years later, longtime members of the in-person group Abby and Brenda Shisslak became admin too, and then started multiple offshoots geared more toward special concerns like caregivers, partners, teens and young adults. Many other groups have since joined the fold of affiliates, increasing both online presence and overall awareness. (You’ll find these and others listed on our resources page.)
Through it all, the EDS and CTD New England/MA Group has met regularly (even via Zoom during the COVID-19 pandemic), offering comfort, support, special guests and visiting researchers to our membership of 4,000+. Jon has continued publication of his information-rich Email Updates. And his goal has remained steadfast since that first summer meeting: Increase awareness, forward the cause of research and initiatives, and we’ll achieve together the level of true support we deserve. “Research opens doors,” he says, “Is it something that can open a door to an answer, or a cure? Create quality of life? I’ll work with anyone to make real change happen.”
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EDS and CTD New England/MA Support Group 