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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.

Marie Lewin warrior

Monica (daughter) was diagnosed with Wilson’s Disease at the age of 18, like many others it was a late diagnosis and many complications could have been avoided if there was more awareness to the condition and she was diagnosed earlier.

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Katherine Justin Garlepp warrior 

There are certain moments in life that are forever etched in your memory. The moment my son, Justin, was diagnosed with Wilson's Disease is one such moment. Another related but much happier moment was when Justin met another Wilson's Disease patient for the first time since being diagnosed 8 years ago. At the Big Wow event in Loomis, CA, Justin met a kindred spirit in fellow patient Zach. The boys had never met before but were instantly connected by the experiences they shared together as teens living and thriving with Wilson's Disease.

My hope for the Big Wow is that it will allow other patients the opportunity to connect with one another and know they are not alone. 

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I was diagnosed with Wilson’s disease in my junior year in high school. It was an early diagnosis, and my disease was caught and treated before severe symptoms started occurring.

This experience of getting diagnosed led to my career interest of biomedical engineering, which I just graduated with my masters degree in at Johns Hopkins. In my time at Hopkins, I worked for a season in Dr. Lutsenko’s (Scientific Advisor to the Wilson’s Disease Association) lab, and am very excited for the potential of their groundbreaking research in copper metabolism.

I know that the reason my disease was caught and treated early was because of the crucial network of doctors and researchers spanning Texas, Michigan, and Baltimore that I came into contact with, and I am Walking on Wilson’s with the WDA to support and share this life-saving network for the benefit of many other future patients

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Jaime Karachos warrior 

In 2014 my son was referred to a geneticist who thought for sure Wilson’s Disease was a match for his symptoms.  I of course was like “What disease?” And immediately went home to Google it and research as much about this disease I had never heard of before. 

What I found, much like any medical internet search was NOT good, it was NOT reassuring, I was downright scared to death for my sons’ future.  Yet we had to sit and wait for I don’t remember how long it actually was to get the test results back, but it felt like an eternity.  It definitely was not fast in any event.  I thought why aren’t they doing a faster test?  Oh well that would be biopsying the liver, that’s not an easy test.  So we waited & we waited & we waited some more.  Eventually we got the news he was negative and we could breathe again, but realized there are too many who don’t get the great news we got.  

My husband and I vowed to help raise awareness of this disease, but we weren’t sure where to start, so when the Big Wow came across my path it was an easy decision to jump on board and host this event in our city. 

People are suffering with this and many even going around undiagnosed because it’s so un-publicized that even most of my son’s physicians had never even heard of it.  I found this was often the case via a Wilson’s Disease support group which I had joined while waiting for results, doctors just don’t know about it.   So it is our mission to bring awareness to this disease and raise funds for the research to find a cure, get it diagnosed early or at the very least find new medications to help patients along in their journey with this disease and to help their families in understanding and providing the support on a personal level.  

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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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