Thanks to celebrities like Jason Alexander (George Costanza) and Barry Sanders (NFL), awareness of Scleroderma has slowly begun to reach mainstream
society. Unfortunately, many still don’t know about the disease. For some, Scleroderma is a nuisance. For others, it is a life-threatening disease.

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 - 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 and is not easily categorized because of its complexity and varied affects on people. 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.

HERE'S OUR HANNAH's HEROES STORY:

Hi Everyone,
As many of you may or may not know, our daughter Hannah was diagnosed with Raynaud's when she was about 4 years old. (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 Juvenile Scleroderma. It is rare and different from adult-onset Scleroderma. Hannah has Systemic/Diffuse Juvenile Scleroderma which involves the hardening of her skin and early internal organ involvement including heart, lungs, kidneys, gastro-intestional tract, muscle function and joints. (Learn more about Juvenile Scleroderma at
http://www.jsdn.org/aboutjsdn.htm)

For those who are close to us, you already know how brave Hannah is considering all the medical attention that goes on on a regular basis. In addition to the doctor visits and blood draws, we visit the local Children's Hospital every very few months for testing. So far so good on her testing - truly thank God! Her blood draws, medications as well as the diseases themselves can wear down her body and positive attitude very quickly. She requires more rest than most kids her age.

Discovering her battle against these diseases has really been a lot for our little girl to cope with, but we couldn't ask for a more brave, amazing and strong little girl who has been pushed to grow up a lot faster than we would have liked to see. Words cannot express our pride in Hannah.

We wanted to share her story with you, especially when we heard that there is an annual walk/run event that raises money for Scleroderma research. These events are held around the country, If you are not in Missouri, check to see if there is walk near you at: www.scleroderma.org

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 comapny does charitable matching, please consider giving to the Scleroderma Foundation.

All the details/links are below, please feel free to call the foundation for more specifics. 

WE MET OUR GOAL FOR THE 2008 WALK - THANK YOU ALL SOOO MUCH! PLEASE JOIN US IN OCTOBER 2009 FOR NEXT YEAR'S WALK!