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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.

samantha aiken warrior
My name is Samantha Akin. I am 18 years old, and I was diagnosed with Wilson’s Disease in January, 2015. Some of my symptoms were, my handwriting had worsened over the years (micrographia), and I had started having fine tremors in my hands with some irritability. I also had some joint aches and swelling for a few years. However, I was very fortunate that my pediatrician thought to check for Wilson’s Disease.
The result of my diagnosis was/is that my liver is currently at stage 3 of 4 of liver failure (written in the summer of 2015). The tests that have been run: I have had one liver biopsy, one upper GI endoscopy, a hour long MRI twice, countless blood draws / tests, and several 24 hr U/A, all before my 18th birthday. I had a neurologic flare in which I had a severe headache and could not speak clearly for roughly 2 weeks. I don’t know if this is because of the high dose of medication or my brain releasing copper. Perhaps worst of all I can no longer eat my favorite food in the world, chocolate.
Overall, I would say I’m doing okay. My purpose in hosting this WOW walk was to raise awareness of this disease so more people will be diagnosed and receive treatment earlier.
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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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