FOUNDER
Nancy Hanna Rogowski
1957–1995
Chair
Vice Chair
Secretary
Treasurer
Directors
Linda Neumann-Potash, RN, MN, CBN
Elliot H. Clark, Chair
Elliot Clark is the Chairman and CEO of SharedXpertise Media, LLC which he founded in 2006. Elliot oversees company management and the publication of prestigious magazines, summits and forum management covering the human resources, financial management and corporate responsibility functions. Elliot writes a column for each magazine issue with commentary on newsworthy events and speaks at events internationally on related topics.
Elliot has had a long and distinguished career in the Business Process Outsourcing industry. Prior to SharedXpertise, he was the Chief Operating Officer of Kenexa Corporation (Nasdaq KNXA), a leading provider of HR software and services. Elliot worked at Kenexa from 1991 until 2006 and was instrumental in growing the company from 12 to 1200 employees. He oversaw corporate operations and directly managed the RPO division. He led the Kenexa team to be named the top provider in Recruitment Process Outsourcing by multiple industry analysts and publications. As a key member of the executive team, he was deeply involved in 15 acquisitions, 3 private equity financings and an IPO. He served on the Board of Directors of Kenexa from 1997 until 2006.
Elliot also had a distinguished career in the Executive Search industry, completing numerous senior executive assignments in the pharmaceutical and healthcare industry, and was active in the leadership of the largest pharmaceutical affinity association in the world, the Drug Information Association, serving on the Steering Committee of North America from 1994 to 1997. Elliot is a graduate of the Wharton School of Finance and Commerce of the University of Pennsylvania earning a B.S. Economics in 1983 where he majored in Human Resources. He also served on the National Board of Directors of the Wharton Alumni Association from 1997 to 1998.
Judge Richard P. Goldenhersh, Vice Chair
Why did I accept a Directorship of EDNF?
My wife, Barbara, had EDS, but was diagnosed only at age 59. 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 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 having loved and cared 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.
Richie Taffet, BS, MPH, Secretary
Why did I accept a Directorship of EDNF?
I've watched my older daughter go from clinician to clinician, specialist to specialist for almost 10 years being misdiagnosed at each visit. Her suffering physically, although very difficult to watch, has not been disabling yet. She works long days as a clinical social worker counseling others. When she was finally diagnosed with EDS, I began researching EDS myself. EDNF was a blessing as it had a wealth of current and accurate information. The more I researched EDS the more I realized that I, too, had EDS and probably my mother had EDS as well.
I also became frustrated with the lack of knowledge about EDS by most of the health care providers that we came into contact with. Our family quickly became the educators and learned the importance of being advocates for those with EDS.
What skills and experience do I bring to the position?
My professional background is quite varied. Formally I have degrees in both pharmacy and public health, with additional training in health care delivery and administration, human resources and program management. I've been working for the Federal government for over 41 years, gaining organizational and leadership experience. Most of my career assignments involved a component of providing health education to varied populations. I understand the importance of providing the right information to the right individuals (and families) at the right time. I've also served on other Boards of Directors and as a Trustee and President of a non-profit Foundation.
What do I want to achieve as an EDNF Board Director?
I want to assure that EDNF is available now and in the future fulfilling its mission to create resources for those affected by EDS. I want to see EDS discussed in the curricula of new health care providers as a way to provide accurate information. EDNF conferences are great ways to bring together these providers to learn from the "experts" – the researchers, the clinicians and most importantly the individuals who have EDS.
Richard Malenfant, Treasurer
Sandra Aiken Chack
Deb Makowski
Linda Neumann-Potash, RN, MN, CBN
Janine Sabal
Why did I accept a Directorship of EDNF?
My son Aaron, was diagnosed with Ehlers-Danlos syndrome at age one. 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 many 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.