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Stories of warriors touched by Wilson’s Disease and how they fought back by rallying people they know to walk with them and raise money for the patient registry.

mandy swaner warrior

My family and I decided to organize a Big wow walk, Walking on Wilson’s Disease.  Wilson’s disease is what I was diagnosed with.  It is a rare genetic disorder that approximately 1 in 30,000 people are born with.  It is not easy for physicians to pinpoint because they are not aware of what the symptoms might be.

With Wilson’s Disease my liver does not process copper correctly.  Anything that Wilson’s patients eat or drink may contain copper and has the potential to accumulate in our organs, including the brain.  This is what ultimately happened to me. 

I am one of the lucky ones.  I was diagnosed soon enough.  I am able to live my life, raise my son, be a wife, mother, sister, Auntie M and be a part of the lives of three amazing step-children, their spouses and four grand babies. 

Wilson’s patients also battle with insurance companies who are not able to help with payment of claims.  This is due to certain pharmaceutical companies that have raised the price of some of the life-saving medicines beyond what is affordable.  Some of them have increased over 5,000%.  In my case, I was charged $26,000 a month for what was needed to clear my body from toxic levels of copper.  Again, I was fortunate.  I do not need that particular medicine right now, but so many others do. 

Wilson disease does not have a sufficient voice and I believe this walk can raise awareness.



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Jean P. Perog
Jean P. Perog President
Jean is a retired CPA living in Merritt, British Columbia. She has WD and has a brother with WD. Jean also served as Treasurer of the Wilson Disease Association and is an active volunteer in her community.
Carol Terry
Carol Terry Secretary
Carol was diagnosed in 1973 with WD and is a retired US Government accountant. She helped found the WDA in 1983 and served as its President for ten years. She also served as Vice-President, Treasurer and Secretary.
Mary L. Graper
Mary L. Graper VP Scientific Affairs
Mary has over 25 years experience as a volunteer leader, and is recognized for her creativity, organizational and leadership skills. She holds a B.S. degree in Education from the University of Wisconsin-Milwaukee.
Rachel Albert
Rachel Albert Vice President
Volunteering has been an important part of Rachel's life since childhood. Over the years, she has committed her time and energy to numerous non-profit organizations. She majored in psychology and graduated Magna Cum Laude from Amherst College. She also earned an M.P.H. in Geriatrics and Gerontology from Columbia University.
Jeanne A. Friedman
Jeanne A. Friedman
Jeanne is a Licensed Clinical Social Worker and has WD. She has been with Wilson Disease Association since 2013 and lives in Kew Gardens, New York.
Stephen Walsh
Stephen Walsh Treasurer
Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

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