Wendy Cogan, President of the Board

 

As a patient with Ehlers-Danlos Syndrome (EDS) and a sufferer of the multi-systemic impacts of hEDS, Wendy's personal goal is to advance awareness, medical education and research for EDS by leveraging her experiences as a RN and a business executive at Sprint.  After some serious medical complications, Wendy documented her medical history and six generations of her family’s EDS symptoms, which facilitated her ultimate hEDS diagnosis at Mayo Clinic in Rochester at age 57.  After her diagnosis, Wendy became engaged in patient advocacy to help pave the way for others to obtain earlier diagnosis and care.  She attended several out of state EDS conferences and started to engage local and national healthcare providers to expand EDS awareness and medical expertise in Kansas City.  She is one of the leaders of the Ehlers-Danlos Support Group of Greater Kansas City which has grown rapidly to 500 members.  She also functions as the support group’s Ehlers-Danlos Global Affiliate Member.  Wendy is working with local physicians to plan an EDS Awareness and Education Seminar in Kansas City for health care professionals and patients featuring national and local EDS health care speakers.  She is also enrolled in the hEDS Gene Project, along with family members, to help further the identification of hEDS genetic mutations and impacts.  In addition, Wendy functions as a research patient advocate by assisting with EDS research proposals.   

 

Wendy graduated summa cum laude from the University of Michigan with her Bachelor of Science in Nursing (BSN).  In her free time she enjoys reading, exercising, cuddling with her dog Bentley, walking the Florida beaches and boating with her husband, Jeff.

Fred Stein, Secretary of the Board
M.Ed. ,C.A.G.S 
 

Fred was trained as an Certified Educational Psychologist  in Massachusetts, and spent much of his career on Cape Cod.  He worked for over thirty years identifying and assisting students with special needs and their families. He also held the role of Team Chairperson responsible for  communicating with the diverse educational, medical, and allied health disciplines to develop plans for identified students.  He was quite familiar with federal and state  guidelines that determined eligibility for handicapping conditions. 
Fred developed unusual and unidentifiable health issues that caused daily challenges starting in his early thirties. Because of the never ending, loving support of his wife, he never gave up and worked hard to overcome his limitations.  Three decades later he was finally diagnosed with hEDS by a geneticist. One of his missions is to help inform and increase treatment choices for those affected by EDS symptoms. 
Fred graduated summa cum laude from  Northeastern University with a C.A.G.S  in School Psychology.  Fred enjoys going to the gym, playing pickleball, and traveling with his wife, Pam.

Julie Bogner, Treasurer

 

Julie graduated from Missouri State University with a Bachelor’s degree in Accounting and now serves on the Board for EDSKS Collaboration Inc.  Previously, she worked at Sprint Corporation providing financial analysis and support for the Large Businesses division.  Julie has invested many volunteer hours improving local schools with the philosophy to “leave it better than you found it”.  Julie lives in the KC Metro area with her husband, two teenaged daughters, and her rescued terrier mutt Buddy.  In her spare time she enjoys genealogy and nature walks.

Beth Callen, PhD    Board Member

 

Beth is on the board for the EDSKC Collaboration Inc. as well as on the planning committee for the EDS Awareness and Education Seminar to be held in Kansas City in September, 2019. In her other job, Dr. Callen is a Senior Data Scientist at the American Academy of Family Physicians National Research Network. She provides data analysis and management for the AAFP NRN on various projects. She has a Bachelor's degree in Astronomy and Mathematics and a Masters of Science in Atmospheric Science from the University of Kansas. Her doctorate is in Meteorology with a minor in Statistics from Iowa State University.

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