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My husband, Robert Clark, is just 47-years-old yet he has been diagnosed with an extremely rare disease of the nervous system called Stiff Person Syndrome (SPS). To describe what Rob’s body is doing is not easy. On an average day it would be as if you woke up and strapped a 10-pound weight to your neck, one on each wrist, and each ankle. Carry that around all day and that would give you some idea. This condition is characterized by extreme rigidity and stiffness in muscles that can become so rigid they can break bones while just sitting in a chair. His condition is progressing and now loud sounds or sudden movements can stiffen his body. At times, he has actually fallen over like a tree being cut down. A hematopoietic stem cell transplant (HSCT) is his best hope to halt this horrible disease.
Rob grew up in Leesburg, Georgia and graduated from Lee County High School. He owned a Pest Control business, but has been unable to work since his diagnosis. Rob has a seventeen-year-old son, two daughters and a granddaughter that is two. He is fighting for his life so he can watch his children and grandchildren grow up. However, the cost of a stem cell transplant is overwhelming. He needs our help!
Rob will travel to Israel for a consultation with either Professor Slavin or Doctor Askenasy. During that visit he will undergo a painless bone marrow aspiration of his cells while sedated. Those cells are grown in laboratories and after a period of approximately three months, they are infused into the patient at a clinic in Vienna. If he has positive results, then we will precede with HSCT that will, in essence, reboot his system like a new computer after a hard reset. As you can imagine, the travel for Rob and his caregiver, room and board and the procedure itself is very costly and Rob’s insurance will not cover it. This is a challenge he cannot face alone.
To help with the financial burden of Robert’s uninsured expenses, a fundraising campaign in his honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible, are held by HelpHOPELive in the Southeast Stem Cell Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please, consider a contribution.
For credit card contributions, please click the yellow Donate Now button.
Thank you for your prayers, support and generosity. Keep an eye on the website because we will be planning some fundraising events soon.
Gratefully,
Deborah Clark (Robert’s wife)
706-656-5284
Exciting News!!!!!! We received information that his treatment date has been moved up to Feb 1, 2016. After a sleepless night of not knowing if the funds can be raised..... I still know that it can be done!!!!! Thank you for all your Support
Rob and Family
My wife and I am trying to raise awareness for a rare disease cause Stiff Person Syndrome. There was an article in the Newnan Times recently www.times-herald.com
Rob and Family
Rob, you've have such spirit from day one of your life. Our prayers continue to be with you. I'm so proud of how you've handled these obstacles. Keep your faith and there will be better days ahead.
Ann Clark
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Rob Clark
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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