Team Reed - Find A Cure For VWM
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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 struggling to walk. After months of testing, and no answers, Reed was diagnosed with Vanishing White Matter Disease.
Reed is one of less than 300 people in the world with VWM, the 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 his hands function, recently lost his speech, and has started to have seziures. As the disease progresses, Reed could/will lose the ability to swallow, see, and 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. As of January 2024, there are two human clinical trials taking place in Amsterdam and Utah, and both trials are showing huge promise in treating the disease. 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 300 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, Dr. Joshua Bonkowsky and Dr. Allison Bradbury to support their research. (please see www.teamreedcorbsy.com to read more about these researchers) T
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.
Team Reed- Jesse, Erika, and Reed
Organizer
Erika Havlik
Organizer
Jesup, IA
