My dream ....find a cure for VWM!
About three years ago my niece, was diagnosed with leukodystrophy known as vanishing white matter disease (VWM). When I got the call from my sister, it was quite a shock. Like most people, I went through the stages of grief: denial, anger, sadness. I came to acceptance, last year when Prof. Orna Elroy-Stein contacted us about helping her raise funds needed to find a cure for VWM. The idea to "Find a cure for VWM" fundraiser was born, it allowed me to do something about it. I can’t be a scientist finding a cure, so this is what I have to do, raise the money to fund the science. It’s what we all have to do. We don’t have a choice! We’re doing this not just for my niece, but for all kids with VWM. We’re at war with this disease. Currently no treatment or cure is available for this disease. Although research has proven to yield positive results, research into the disease is not very well funded by medical institutions and it needs the help to continue.
I realize, as painful as it is, you have to talk about this disease. People want to help, but they can’t read your mind. You have to educate others about VWM, what it is and how they can help. I would also encourage you to ask donors if their employers have a matching gift program. These programs are like magic. If an employee donates, their company will sometimes double or triple that donation, but the employee has to ask. As a fundraiser, it’s important to ask people to take this one extra step to see if their company will match their gift. I’ve found that most organizations will.
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Vanishing White Matter Disease (VWM) is a form of Leukodystrophy. It is a devastating condition that destroys the brain's white matter. It is a chronic and progressive leukodystrophy with episodes of severe decline following infection, fever, head trauma and acute fright. Following an infection with fever, a patient may deteriorate for days with loss of motor skills, loss of vision, epileptic seizures, vomiting, irritability, depressed consciousness and finally coma. Some patients die during the coma; others recover slowly, but never to the same level as before the coma. The disorder causes deterioration of the central nervous system's white matter which consists of nerve fibers covered by myelin. Myelin is the fatty substance that insulates and protects nerves. There is no cure or treatment for the disease. Life expectancy of a child diagnosed with this disease is only into the early teens. VWM is a rare disease , very few physicians know about it, and even fewer scientists are interested in studying it.Professor Orna Elroy-Stein from Tel-Aviv University is one of the few researchers in the World studying VWM.She is focused on research surrounding VWM disease and finding a cure.
My dream is that science and research makes VWM a condition people can live with. I want everyone with VWM to have the ability to live a full, meaningful life. That would be a gift!
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Believe it or not ~ we reached over $ 100K and counting :) I said it once and I'm going to say it again, this amount would not have been possible without help of ALL our friends/family ~ the entire community and our VWM Dream Team! "It takes a village.....to find a cure for VWM" ~ We all put our hearts and hard work into raising funds needed to "Find a Cure for VWM" !~ In addition, employers matching gift programs were a big help with this fundraiser. We had 4 employers matching x $ 5,000 each = $ 20,000 ! Thank you very much for your help and support
Please continue :
1. Pray for a cure to come soon !
2. Spread awareness and "like" our FB page: https://www.facebook.com/pages/Find-a-Cure-for-VWM/213513405456078
3. If you are interested in making a tax-deductible donation to support Prof. Orna Elroy -Stein, you can do so through AFTAU. Make your check payable to: American Friends of Tel Aviv University (AFTAU)
Mail to:9715 Woods Drive # 1608Skokie, IL 60077-4447Attn: Rick Kruger/Orna Elroy-Stein research for VWM
Last but not least, not only we raised over $ 100K but we also raised VWM/CACH awareness, I've mailed bracelets/t-shirts/key-chains all around the world....and as I always say: Awareness = Funding =Cure= HOPE! This gives us a hope that cure will be here soon......!
Many thanks to all, "it takes a village" !!!
