My Mission

I thought it might be helpful to take a step back and share my mission of building awareness around dystonia.

Through a variety of activities and forums including our annual benefit, dystonia advocacy day on Capitol Hill in DC and writing this blog to share my thoughts on living with dystonia,  I want to raise awareness for this rare disorder, provide insight into how dystonia impacts my life and inspire people to live, work, exercise and chase all dreams while including some humor/laughs along the way.  My focus is in on other people with movement disorders but I am finding the struggles, opportunities and view of life is applicable to all audiences.

After attending the 2004 Children’s Symposium on dystonia in Chicago at the headquarters of the Dystonia Medical Research Foundation (DMRF), I was motivated to do something to help the children and anyone who suffers from this horrible disorder.

With a lot of help from family and friends, The Help Find A Cure 4 dystonia Benefit started in December 2004.  I am humbled by the support I have received around this event and hoping you will be able to join us for the 9th annual benefit which was held on 12/21/12 and the 10th annual held on 12/20/13 – Both were great successes!  We are always accepting donations for our silent auction of sports/entertainment memorabilia.  To date, we have raised over $172,000 that has been given to the Dystonia Medical Research Foundation.

Currently, I am coaching Girls Varsity Basketball at Crestwood High School and working part-time for Benjamin Real Estate in Conyngham, PA, volunteering for The DMRF and trying to make every day a great day!

Please share this with all your friends and family.  With over 300,000 people in North America afflicted with dystonia and many more with movement disorders, raising awareness and financial support to find a cure gives all of us hope that anything is possible.

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3 responses to “My Mission

  1. As a fellow Dystonia blogger seeking to raise awareness, I’m thrilled to have such wonderful company. I’ve met a number of people with Dystonia through my involvement in fundraising, advocacy, awareness, and also local volunteer work in NYC, all incredible individuals who are fighting an unforgiving disease and trying to make the world a better place. You and everyone I’ve met, online and in person, have truly made it easier to cope with this disorder and give me hope that one day we will find a cure!

  2. Hey Pat, it’s good to see you’re still fighting the good fight. Keep up the good work and stay strong!!
    God bless!

    Your old friend,
    Ken (23 yrs and still fighting)

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