Thanks to celebrities like Jason Alexander (George Costanza), Barry Sanders (NFL), and my Dad, awareness of Scleroderma has slowly begun to reach mainstream society. For some, Scleroderma is a nuisance. For others, it is a life-threatening disease.
Surprisingly, it is the 3rd most common auto immune disease ranking only behind Rheumatoid Arthritis and Lupus, and, despite much less publicity, ahead of MS.
It is chronic, progressive and centers on the patient’s body’s immune system attacking itself by over-producing collagen and causing hardening of tissues. Scleroderma, which literally means “hard skin”, can be visible - such as thickening / tightening of skin, or invisible (as was in my father’s case) - such as serious organ damage of the lungs, heart, kidneys, esophagus and GI tract. Scleroderma is often difficult to diagnose because it mimics other diseases. The disease occurs 4 times more often in women than in men and affects all ages and races.
Of the 300,000 people afflicted with Scleroderma in the US, it is believed that at least 14,000 of them call Missouri home. Many of these likely don't even know their diagnosis yet.
“Steppin’ Out to Cure Scleroderma” is our Missouri Chapter’s lone awareness event and fundraiser.
In Honor of Stan Pinski:
As many of you may or may not know, my father was diagnosed with Raynaud's Phenomenon long before his scleroderma diagnosis. (Learn more about Raynaud's at http://www.raynauds.org/) Since then, the Raynaud's has been discovered to be a secondary condition, or indicator, of a more serious disease. This disease is Scleroderma (website: http://www.scleroderma.org/).
Those close to our family already know how brave my father was, only wanting to enjoy his time with friends and family by sharing memories and lots of laughter. He passed a year ago this September 1st. He continues to be an inspiration to many who knew him, especially me and my mom (Rene & Zona). Although we miss him terribly, I think of him every day as I strive to live life to the fullest and be happy – he wouldn’t want it any other way. In honor of his bravery throughout this disease and his never-ending optimistic outlook on life, "The Three Dulles" (i.e. Sean, Rene, and Joel) are working to raise awareness of scleroderma and generate donations for much needed research by running in this event for the Scleroderma Foundation – Missouri Chapter.
Registration is $25, and IS tax deductible since it is a charitable organization. Although $25 is the registration fee, feel free to make a donation of any amount to the Scleroderma Foundation at any time. If your company does charitable matching, please consider giving to the Scleroderma Foundation.
Hope to see you Saturday, Sept 17th at Creve Coeur Park/Lake - Tremayne Pavilion
9:00 am: Registration & T-shirts, breakfast with Jasmine Huda, and raffles for awesome gifts!
11:00 am: Walk/Run around Lake (approx 3.5 miles) begins
Thank you for visiting our Awareness and Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support!