Team Reed - Find A Cure For VWM

$5,030 of $100,000 goal

Raised by 64 people in 10 months
Reed Havlik is a happy, smart, loving little boy from Jesup, Iowa with a very rare terminal genetic brain disease called Vanishing White Matter. At the age of two, Reed was a normal developing boy running around, happy, healthy and loving life. On November 1st, 2014 Reed woke up from his nap struggling to walk. After months of testing, and no answers, Reed was diagnosed with Vanishing White Matter Disease.

Reed is one of less than 200 people in the world with VWM, odds of having VWM are one in 40 million Reed’s white matter in his brain is melting away, as this happens Reed has lost the ability to walk, has lost steadiness in his hands, and some speech delays. As the disease progresses, Reed could/will lose the ability to use his hands, lose his ability to talk, swallow, see, hear and will eventually cause organ failure and death. A bump on the head, high temperature, cold/flu, stress or fright could speed up the disease and kill Reed. Reed will experience a lot of pain and suffering and die at an early age if the cure is not found in time.

But there is hope...

Doctors are working on a cure with promising research taking place to stop the disease in its tracks. The problem, however, is funding and speeding up the progress of this cure comes at a cost of approximately two million dollars. With less than 200 cases worldwide, pharmaceutical companies don’t see it as commercially viable and it is therefore up to the families affected to raise the funds to save our children. And we are in a race against time. The life expectancy on average is only five to ten years from disease onset. We are doing everything we possibly can to raise these lifesaving funds but we can’t do it alone. With your help, a cure can come in time to save Reed.

Stay up to date with Reed at:

Please note that Team Reed is not a 501c3, however, all donations made through our campaign will go directly to VWM Research to these organizations,  Professor Orna Elroy-Stein, Professor Marjo Van der Knaap,  and the VWM Families Foundation to support their research. There are treatments on the horizon but we need roughly $2 million to get these drugs to clinical trial as soon as possible. 

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What is VWM? Vanishing White Matter disease (VWM) is a very rare neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects the transmission of brain signals to the rest of the body. VWM primarily affects children and is untreatable, incurable and terminal. You can make a difference. Doctors are working on a cure, with promising research taking place however funding is urgently required to speed up this process. For further information on our fundraising milestones and what the funds will be used to purchase: Professor Orna Elroy-Stein: $500,000 for a key piece of laboratory equipment called a MALDI TOF machine which is a powerful tool for drug screening and will enhance Prof. Elroy-Stein's research $500,000 for outsourcing of testing which can be done many times faster in a much larger commercial lab Professor Marjo Van der Knaap: $250,000 to secure two PHD students for the next couple of years $500,000 for the next phase of testing of the promising compounds that have been identified as potential treatments for VWM Patients. Professor Van der Knaap to date has received grants for her research and has made significant progress toward a treatment, however, her research has been put on hold due to the grant funding being depleted. Thank you from the bottom of our hearts for helping us in our race against time. 

Team Reed- Jesse, Erika, and Reed
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$5,030 of $100,000 goal

Raised by 64 people in 10 months
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Francesca White
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