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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.

Beverly Walsh warrior 2018

Beverly Walsh 2018

Our family was touched unexpectedly by Wilson’s Disease on Christmas Day 2015 when my oldest daughter suddenly began showing signs of liver failure. She was admitted to the hospital and experienced numerous complications before passing away on January 19, 2016. Due to the complications and the advanced liver and kidney failure, we did not receive a diagnosis of Wilson’s Disease until after she died. Elise was 12 years old.

After her death and diagnosis, Elise’s three younger siblings were all tested and two of them were also diagnosed with Wilson’s Disease. My 11-year-old daughter Karina and 10-year-old son Jonah are both currently undergoing chelation therapy and are doing well.

We are sponsoring this walk to raise awareness of Wilson’s Disease and to build a support network for those battling this life-long disease.

 

 

 

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Jackie Maloney warrior 2018

jackie maloney 2018

Before his unexpected diagnosis, Mike Barnett (38) was your typical middle-aged man who supported his wife Sara, and their two children, Connor (10) and Carly (6). He owned his own business, played softball, and helped coach his children's baseball and softball teams. He was a terrific guy that would pitch in and help a friend move, or help an elderly neighbour.

Unfortunately, this young family was hit hard when Mike was diagnosed with Wilson’s Disease on March 16, 2018. While Mike had unknowingly had this disease his entire life, the diagnosis did not come until he had memory loss, seizures, and cirrhosis of the liver. He has been hospitalized and bound to a nursing home since diagnosis and is currently being assessed for a liver transplant. Mike has been undergoing treatment and therapy, but continues to struggle with the effects of this disease.

The family was hard hit by this disease as Mike had always been the financial head of household. Currently awaiting disability, the family has struggled to navigate the healthcare system with expensive medications and long-term 24-hour care requirements. We are walking for Mike for the Big Wow to help raise awareness of Wilson's Disease and to help build a support network for our area for those battling this life-long disease.

#BattleWithMike ️ #WinningWilsonsTogether

 

 

 

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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 Vice President
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.
Jeanne A. Friedman
Jeanne A. Friedman Secretary
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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