Connect with Wilson Disease Association

Send Email

Physician Contacts

List of Physicians and Institutions in Your Area

View Contacts

Support Contacts

Individuals who can offer Support and Information

View Contacts


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.

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.  

Pin It

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.

Search Our Site