FOUNDER

Nancy Hanna Rogowski
1957–1995

Chair

Elliot H. Clark

Vice Chair

Judge Richard P. Goldenhersh

Treasurer

Janine Sabal

Paul Ruffin

Brad Tinkle, MD, PhD

Judge Richard P. Goldenhersh, Vice Chair

Why did I accept a Directorship of EDNF?

My wife, Barbara, has EDS, but was diagnosed only two to three years ago. The diagnosis explained a life of pain, bone dislocations, and complicated and nearly fatal surgeries. With knowledge came the ability to cope, the ability to remedy to the extent possible, and some peace of mind as to prior medical mysteries. Anything I can do to help her and others dealing with EDS, I will do happily.

What skills and experience do I bring to the position?

I have organizational experience with the Illinois Judges Association (past President, and other offices and current Board Member), the Illinois State Bar Association (Chair of a section council), Jewish Federation of Southern Illinois (Board, Vice President, Parliamentarian), the St. Louis Committee on Foreign Relations (Board), and other board memberships, past and present. Along with board and executive experience, I have also drafted and revised by-laws, both as an organization member and as a lawyer. As an officer and committee chair, I have also had to evaluate programs, committees, and member performance. This experience, along with forty years of love and caring for someone with EDS and sharing her highs, lows, and problems, can only increase my effectiveness as an EDNF Board member.

What do I want to achieve as an EDNF Board Director?

I want to strengthen and stabilize EDNF so it can effectively provide service to its members in dealing with EDS and its effect on one’s life and as a resource of medical understanding by both patient and health care professionals.

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Janine Sabal, Secretary/Treasurer

Why did I accept a Directorship of EDNF?

My son Aaron, was diagnosed with Ehlers-Danlos syndrome at age 1. We have been frustrated by the lack of knowledge and treatment options for him. The only way for there to be a change is for us to be part of making it happen. I want to be part of making the future better for Aaron and all of those who have Ehlers-Danlos syndrome. 

What skills and experience do I bring to the position?

On the board, I am primarily representing parents and children with EDS. Our family has done several fundraisers (golf outings, bowling, raffles) to raise money to support EDNF through the Sabal EDS Foundation. I have been a member of EDNF for nine years. For three of those years I ran the Chicago Branch of EDNF. Professionally, I am a speech pathologist with over 20 years of experience working with children with disabilities. I have always been a strong advocate for my students and have become an even stronger advocate for those with EDS.

What do I want to achieve as an EDNF Board Director?

I’d like to help promote EDNF as the primary resource for those affected by EDS, medical professionals, and families.

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Bradley T. Tinkle, MD, PhD

Why did I accept a Directorship of EDNF?

As a doctor who specializes in connective tissue disorders, I have long seen those with EDS. In years past, making the diagnosis for us was easy but we had little to offer in the form of treatment. On the other side, the journey taken by those with EDS to even get to the diagnosis was daunting. While a diagnosis was a positive step forward, we left such individuals on a dimly-lit path ahead. We have learned so much from those affected by EDS. It became clear that we not only needed to serve the individual patient but the population as a whole. We need to do better by educating other healthcare professionals about recognizing EDS and initiating dialogue to improve the lives of such people. Through the EDNF whose mission is largely information, we can begin to educate healthcare professionals by sending out information, making it more readily available, and empowering the patients themselves. Once identifying expertise in the various medical fields, we can begin to talk and formulate better ways to treat…EDNF can be the focusing lens through which this can happen.

What skills and experience do I bring to the position?

I have little organizational experience to offer the Board but what I have is the keen insight into the many issues faced by those affected by EDS and the vision of how to address the many needs still left unmet. My experience with hundreds of individuals with EDS has identified the many, many, many issues that still remain. These are the questions I can challenge the Board with and help identify solutions to move forward.

What do I want to achieve as an EDNF Board Director?

EDNF must remain a support organization for those with EDS. It must continue to offer accurate information and a place where people can ask questions and get the RIGHT answers. Although research is important, the lack of knowledge from today’s (and frankly tomorrow’s) healthcare providers is potentially harmful in that many will go unidentified or be given the wrong types of therapies potentially doing them harm. This is a war of information fighting the lack of information and the wrong information (yes it is 1 against 2 but we are strong!). EDNF can only hope to identify these issues, and make plans to move forward. Any group is as strong as its members. We need YOU involved to spread the information and provide support.

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