Donna Skwirut wrote -
Can you please help us Find a Cure for VWM ?
Update: 4/15/14~ anonymous donor offered to make a matching donation up to $5,000.00. What this means is your donation is doubled for every $1 you give ~ it will actually be $2 from today until the fundraiser hits $ 5,420.00 !
What is VWM ?
Vanishing White Matter Disease (VWM) is a rare and degenerative brain disease belonging to a group of conditions called the Leukodystrophies. VWM Disease causes the deterioration of the central nervous systems' white matter. There is currently no cure or treatment for this awful illness. As VWM is so rare, there is minimal funding available to continue researching a cure. The average life expectancy of VWM patients is 5-10 years from onset of the disease.
I was once unaware about VWM. I never heard of the disease and did the thought of it ever affecting my life never even cross my mind. But then in 2009, my niece was diagnosed with VWM Leukodystrophy, and ever since that moment I’ve been searching the web like crazy, day and night, trying to help my sister save her daughter. I can still remember clearly the day my sister told me about the MRI results, and how they showed signs of Leukodystrophy. I was devastated, and the more I read about Leukodystrophy the more horrified I would get. My heart sank when in one article I read stated, “These disorders are progressive, meaning that they tend to get worse throughout the life of the patient”.
While there is research currently being conducted, there are no treatment options available for VWM disease. Prof. Orna Elroy-Stein from Tel-Aviv University is one of the few researchers in the world studying VWM disease. She is focused on research surrounding VWM disease and finding a cure for VWM. The process of finding a cure is very tedious and expensive, and consists of several phases. Scientific research is like putting together a huge jigsaw puzzle. It takes months and sometimes years. Currently however, there is no major funding dedicated to VWM research. Without funding there is no hope for a cure, which is why I’ve decided to stop waiting for an answer and put matters into my own hands. 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.
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!
They say " money can't buy you happiness" but when it comes to research money can help Prof. Orna Elroy-Stein to Find a Cure for VWM ! ....~ "The more money is restricted to VWM research.... the more projects researchers can run. Money allocated to VWM will keep Prof. Orna Elory-Stein working towards finding a cure and it will minimize her stress to find research funding. Prof. Orna Elroy-Stein is determine to find a cure for VWM and donations, through the American Friends of Tel Aviv University (AFTAU), are vital to ensuring VWM research can continue. This is because grants do not cover the full costs of research, especially the purchase of equipment vital to VWM research.
Thank you for reading this post, spreading Leukodystrophy awareness ad being a citizen scientist !
Without your support Prof. Orna Elroy-Stein and her team would not be able to do their work. Every gift makes a difference. Thank you!
Funds + Research = Find a Cure for VWM = HOPE!
Checks can also be sent to AFTAU:
9715 Woods Drive, #1608
Skokie, IL 60077
Attn: Rick Kruger/Orna VWM research
To spread awareness see: https://www.facebook.com/findacureforvwm
and see this link : http://southtownstar.suntimes.com/photos/galleries/index.html?story=21752529