Meet the CTC Board of Directors

Jon 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.

​

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.

Donna is the co-founder of Elevate Rare, she is a board member for The Coalition Against Pediatric Pain and Merlin’s Kids Service Dogs, and 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.

​

David has been a Financial Professional working in the multinational manufacturing sector for over 35 years.

​

He earned both an MBA and MSA from the University of Southern New Hampshire University and his BA from the University of Southern Maine. His personal accolades encompass working on numerous community service projects while working for the Timberland Company and serving as chaperone for multiple high school students' overseas educational trips.

​​

​

​

​

​

​

​

Maria is a disabled non-binary mother-of-two, jazz-loving immigrant from Germany. "I live with a heritable connective tissue disorder that is unique to our family". Since 2016, Maria has been leading the Ehlers-Danlos Syndrome Chicago Support & Awareness group. Maria provides support to many patients with connective tissue disorders, in person as a patient advocate and remotely.

​

Maria is passionate about policy research and advocacy to improve access and quality of care for people with heritable connective tissue disorders. Maria has an academic background in education and community leadership. Maria loves solving puzzles and problems!

Lynnette is a proud mother, and a tireless advocate for EDS and rare diseases. She lives with multiple disorders including EDS, multiple autoimmune diseases, and POTS, just to name a few. This has motivated her to spread awareness in any way she can. Lynette is the 5K race director of the WE ARE CTC 5K. She is dedicated to creating awareness, building community, and making a positive impact in the lives of others.

Living with a connective tissue disorder has shaped her in many ways. It has taught Lynnette resilience, perseverance, and the importance of compassion. She refuses to let her physical challenges define her or limit what she is capable of accomplishing. Lynette is passionate about advocacy and helping others feel seen, heard, and supported. She loves bringing people together for meaningful causes that promote hope, connection, and change. Her journey has taught her that even in the face of adversity, it’s possible to continue growing, giving back, and embracing the things that bring happiness and meaning.

​

​

Erin Farnsworth Pitkin is Accessibility Coordinator for Mass Audubon MetroWest, where she leads efforts to expand inclusive access to environmental education and community engagement. Since 2014, Erin has led the development and implementation of MAPLE (Mass Audubon Accessible Programming and Learning Experiences), creating environmental education and vocational internship opportunities for more than 300 participants of all abilities. She also develops and delivers regional and statewide staff training on accessibility and inclusion, helping strengthen inclusive practices across programs and teams.

Erin’s professional background spans adaptive education, behavioral support, and recreation. Her previous roles include Behavior Specialist at Life-Skills, Inc., Adaptive Snow Sport Director at Wachusett Mountain, special education teaching roles at Cardinal Cushing, and adaptive sport instruction with AccesSport America and the National Sports Center for the Disabled. She holds an ADA Coordinator Certificate from the University of Missouri, previously held Massachusetts LSWA licensure, earned a B.A. in History from the University of Massachusetts Amherst, and brings additional certifications in adaptive and alpine skiing instruction. Her work is grounded in a long-standing commitment to accessibility, inclusion, and creating meaningful opportunities for people with disabilities.

​​

​​

​

​

​

​

​

​

​

Jill lives with Ehlers-Danlos Syndrome, (h-EDS / hypermobile type), POTS, and Mast Cell Activation Syndrome. Her diagnostic journey has been long and hard. After years of being misdiagnosed, disbelieved, and left to fend for myself during some of the scariest medical incidents of my life she decided to help others with similar experiences. 

She is determined to change the perspective on connective tissue health conditions and their co-morbidities. Jill wants patients to be treated with the respect and get the care they deserve, and the medical community to take us all seriously. She aspires to help streamline the diagnostic journey for patients and for their conditions to be recognized as valid. 

Jill believes that patients should be treated with respect and doctors should have an avenue to recognize connective tissue health conditions. Patients need support while going through their condition and guidance in getting help.

Debbie earned her BS from the University of Massachusetts and a Master’s degree from Antioch College. Early in her career, she taught special education and founded the special needs preschool program in Needham, Massachusetts. She later transitioned into sales and published a monthly newspaper for new homeowners while raising her two daughters. Following retirement, Debbie and her husband, Jack, split their time between Cape Cod, Massachusetts, and Delray Beach, Florida. Jack brings over 35 years of financial expertise as a former partner at the accounting firm Waldron H. Rand & Company P.C., Certified Public Accountants, and holds a degree from the University of Hawaiʻi - Shidler College of Business. After their oldest granddaughter was diagnosed with Ehlers-Danlos Syndrome at age 15, Debbie and Jack became dedicated advocates, working tirelessly to raise awareness and support   

Diana is the editor and co-author of Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders, a comprehensive, 688-page reference guide. Edited by Diana Jovin and co-authored by over 20 medical specialists, it provides both patients and physicians with vital strategies for managing these complex, multisystemic conditions.

Diana's work with Disjointed is an effort she embarked on with her daughter, who is living with hEDS.

​​​​

​

​

​​​​​​​​

​

​

Amanda is a retired nurse and national advocate for individuals living with Ehlers-Danlos, Dysautonomia, Chiari Malformation, and related conditions. After spending years navigating the health care system as a complex patient while advocating for affected family members she became determined to crowd source information and resources by building online and local communities with a goal to improve patient outcomes. She has establish the Dysautonomia Support Network, Dysautonomia Talk, and the Facebook support group, Dysautonomia: All We Know So Far. She has contributed to several national advisory and committees focused on Dysautonomia, Arnold-Chiari, Malformation and EDS-related issues for more than a decade. She is passionate about  health equity, improving access to care, and simplifying the patient experience for medically complex individuals and families. 

​​​​​​​​

Colleen has over 37 years of financial aid administration, and higher education

compliance and operations experience. She is currently serving as the Interim Chief

Compliance Officer for St. Andrews University in Laurinburg, NC. Her career has

included working for the United States Department of Education as an Institutional

Review Specialist (Program Reviewer), for a public accounting firm that specialized in Title IV Compliance Audits, and for various proprietary and traditional institutions of higher education. During her career, Colleen has volunteered her time to serve on the Executive Board of the Eastern Association of Student Financial Aid Administrators and on the Board of Trustees for Joyce University of Nursing and Health Sciences. Colleen is well known for her delivery of presentations and training sessions. Her experience is vast and varied and has always proven to be a tremendous asset to the institutions with which she has been associated.

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.

Stacey Mueller Slotty lives in Madison, WI. Her father’s chiropractic practice, scientific books and medical discussions inspired Stacey’s innate scientific curiosity. Given the onslaught of unusual injuries, chronic pain, systemic challenges and bizarre medical issues that would plague her, that curiosity became part of her tool kit. Many of those issues seemed “normal” in her home where, unbeknownst to them, her father had vEDS and her mother had hEDS. 

​

Stacey earned a BA in Psychology from UW-Milwaukee. While raising her family, she worked in the school district, volunteered on non-profit boards and ran parent support groups. In 2006 she was recruited by the State of WI for a SAMHSA project, then worked as Parent Support Program Coordinator for a non-profit working with at-risk youth.

​

Stacey pondered what was behind her medical issues, asking doctors for help, but EDS was never mentioned. Her medical challenges multiplied, until one surgery in 2014 resulted in septic shock, death-defying emergency surgeries, and a lengthy recovery. Ultimately, she never worked full-time again.

In 2016 at age 55, the genetic diagnosis of Vascular Ehlers-Danlos Syndrome finally found her, answering decades of questions.  Many with CTDs relate to this. Stacey retired in 2017 due to disabilities.

Stacey is relieved that her vEDS children and grandchild are doing OK for now - but she remains very concerned about the ignorance that persists in the medical field. She believes that disseminating information about CTD’s (and other medical conditions) to the population at large - including citizens, providers and educators - may save lives.

Until her early retirement on disability, following majoring in Russian at Northwestern University, Jane Yount worked first for the National Security Agency (NSA), followed by the CIA.  At the NSA she focused on Russian submarines and ballistic missiles.  While employed by the CIA, she was initially a Language Officer in Operations, then an Intelligence Officer, writing reports and directing collection of intelligence regarding Russian strategic weaponry, working closely with the USN, and to a lesser extent the USAF and US Army.  Following early retirement, she moved back to her hometown of St. Louis, MO.  Until her health issues advanced, she trained several of her Shih Tzus to do pet therapy and visited Ranken Jordan Children's Hospital, the VA hospital at Jefferson Barracks, and skilled nursing facilities.  Following diagnoses in her late 50's of a pathogenic variant of Beals Syndrome, MCAS, and vasovagal syncope, Jane founded "St. Louis Ehlers Danlos, Marfan, Loeys-Dietz, Beals/FBN2 Support Group" on Facebook.  She also serves on the Barnes Hospital Patient and Family Advisory Council and Ethics committees.