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From Wilson Disease Association

Dear WDA supporters,

On July 3, a young man in his early 20’s and also a Wilson Disease patient, lost all hope. Using an assisted suicide program, he took his own life because he believed he would never overcome what happened to his body as a result of Wilson’s Disease.

I wish my words could be more eloquent about this loss to our community. We have Wilson Disease patients within the organization, that at one time considered or failed at suicide, and they attempted to change his mind. Leadership of the WDA asked him to have hope and wait. They were not successful. As painful as this is for you to read and for the people that tried to save him, there are important reasons to share this sad news.

We don’t know who is on the very edge of despair. You might be reading this right now. We want you to take heart. This is a very critical time in medicine where scientists are developing gene therapies that were only a dream a short while ago. New drugs are in clinical trials. The rate of medical advances is accelerating.

There was a time when premature babies could not survive and now they can. There was a time, when there were no antibiotics. There are surgeries and procedures and therapies that were only ideas a decade ago. There are cures for hepatitis C , and promising results for HIV. We agree that there has been a slow start to even recognizing Wilson Disease much less treat it, but we are pushing ahead because there now exists a global community of researchers and physicians all looking at Wilson Disease. We have started a comprehensive Patient Registry.

We will not quit and we will not lose hope.

In the meantime, what makes a person lose all hope is something I cannot answer. Stopping your medications is not the answer. If you are having difficulties getting your medications, contact us.

What can we do as a community? Let us get Wilson Disease showing on the medical community radar. Let’s raise awareness by wearing our Big wow shirts or caps or telling someone about Wilson disease. How about sharing your stories about the struggles and challenges of this terrible disease with us online at "We are Wilsons," so other patients don’t feel alone and isolated. Let us be kind to each other, even when we are having a bad day. Choose Wilson Disease to be your charity and ask others to be supportive too. Let’s celebrate every step of progress so that those on the edge of despair will not lose hope. When we are quiet, we are invisible. The old adage, "out of sight, out of mind." is true.

For tangible ways you can help we have a page on our website listing many things you might do. Here is the link to that page. Ways you can help page I would like to highlight having a Big wow walk because they create excitement and awareness and also because it is coming up quickly and we need more volunteers. I also mentioned the “We are Wilson’s” page where all you do is send in your story and photo. Donations can be made on our website main page or through the Ways you can help page. Corporate sponsors reading this, we need your help too.

Please contact me if you have any questions about ways you can help now or in the future. Remember, many of you have been fortunate enough to have been diagnosed early but others of our community are suffering both physically and emotionally. This disease affects generations.

Highest Regards,

Judi Keller

(414) 961-0533 extension 3000

 

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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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