Hello Friends and Family,
Thank you for joining us in our 9th Annual Stepping Out to Cure Scleroderma Walkathon. As most of you know, Mom has had scleroderma for over 14 years. Thankfully, she is relatively stable, requiring an esophagus dilation (stretch) about once a year and dealing with chronic pain in her hands due to extreme skin tightening and finger ulcers. She is dealing with other symptoms such as fatigue and gastrointestinal challenges as they come. Overall, feeling pretty good – still at least well enough to care for and enjoy the granddaughters!
This year, we are dedicating our walk to the memory of a wonderful young woman, Eva Partida. Eva was diagnosed at age three (3)! While most people are affected later in life, sadly, the disease does affect many children. Eva was an incredible person – always giving and always happy to help others. She was hospitalized many times during her short 22 years, yet still managed to have a larger than life attitude … never letting scleroderma get her down nor stop her from living! You can see her zest for life in this photo of her and Mom (to the right) at the gala in 2007 … all dressed up in evening wear with her purple hair! She was such an inspiration! – not only for those with the disease, but also for all of us who know we can always do more to make our lives, or the lives of others, better. We will be putting a stripe of purple or blue in our hair the day of the walk in her honor. We can’t wait – we think she would love it!
Yours and others’ contributions over the years are making a difference! There have been great improvements in earlier diagnosis for this rare and hard to diagnose disease. Treatments for renal crisis and Pulmonary Arterial Hypertension have greatly improved mortality rates for patients affected by these ailments. In addition, recently, there have been great strides in stem cell transplantation, halting the progression of the disease. (No, this is not related to embryonic stem cells. This is a procedure that breaks down and rebuilds the immune system, using/recycling the patients’ own stem cells).
Last year, Team Kelly and Bonnie was one of the largest teams, and we were the biggest fundraiser bringing in close to $18k with the help of our fundraising teammates Jan, Jeri, Jo, Diane, Tina, Nora and Darla. Thanks to them and to You All for your contributions!
It is our hope that we continue to be leaders in this fundraising effort with all of the same enthusiasm and success to continue furthering the Foundation’s three-fold mission of: Support for patients and families, Education and awareness about the disease, and funding for Research that will ultimately lead to a cure.
We would love for you to join us this year and provide support in any way that best fits with your current situation:
1) Join us for the walk. It’s Sunday, June 5th at La Mirada Regional Park (8:30am to 2:00pm) – Live music, raffles, kidzone with bounce house, and lunch. Cost is $20 for adults, $5 for kids 6-12, free for kids under 6 (includes lunch and t-shirt). *Please register early as cost will be $25 the day of the walk.
To register on-line, click here: www.firstgiving.com/SCCWalk
2) Make a monetary, tax deductible donation – no amount is too small … $15, $25, $50 or more …
a. On-line here by clicking the "donate" button
b. Send a check payable to SFSCC (Scleroderma Foundation So Cal Chapter) to Bonnie Davidson (we'll provide you with an address)
3) Collect Donations from your Friends and Family. It’s a very rewarding experience! Let us know if you’d like some ideas and/or help getting your own webpage started as part of Team Kelly and Bonnie. Click here to create your page (then click on the orange Raise Money tab): www.firstgiving.com/SCCWalk/Event/9thAnnualWalk . Be sure to select Team Kelly and Bonnie! :)
4) Say a prayer for Mom and all patients and families affected by scleroderma.
If possible, please respond by May 30th
Thank you so much for your support. It truly makes a difference!
Warmest regards,
Bonnie and Kelly
Scleroderma is a chronic, auto-immune disease for which there is no cure; the cause is still unknown. Symptoms vary from mild to life threatening and can be in the form of stiff and deformed hands, gastrointestinal and/or lung involvement, to extreme fatigue and chronic pain. For more information about the disease, please take a few minutes to view the following video at: www.scleroderma.org/videos/aboutus.asx
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Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!