DEAR FAMILY AND FRIENDS...

Thanks to celebrities like Jason Alexander (George Costanza) and Barry Sanders (NFL), awareness of Scleroderma has slowly begun to reach mainstream society. Scleroderma can range from being a nuisance to 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 (as in Hannah's case) - such as serious organ damage of the lungs, heart, kidneys, esophagus and GI tract. 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, now age 8, was diagnosed with Raynaud's Phenomenon 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. Her blood draws, medications as well as the diseases themselves can wear down her body and positive attitude very quickly. She requires much more rest than most kids her age.

Discovering her battle against these diseases has really been a lot for our 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 and how special we think she is.

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 the Scleroderma Foundation.

(NOTE! - Hannah is designing the shirts again this year, those participating in the walk/run or those sponsoring our Hannah’s Heroes Team with a donation of $25 or more receives a “Hannah Original” t-shirt as a gift from Gabriel and I to individuals who support the Scleroderma Foundation and the walk/run. We need to know about those donating and participating (and their t-shirt size!) by October 1st so we can include your shirt in our “Hannah Original” t-shirt order. -Diane)

Please click on "JOIN THIS TEAM" (SEE ABOVE RIGHT) to register for the walk/run or to choose the "sleep in" option!! Welcome to the team!

To make a donation in Hannah's honor, please see below.... 

...Thank you for visiting my Personal 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-- and don't forget to forward this to anyone who you think might want to donate too!