Reed is a happy, smart, loving boy from Jesup, Iowa with a very rare terminal genetic brain disease called Vanishing White Matter disease. At the age of two, Reed was normally developing. 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 300 people in the world with VWMd, the odds of having VWM are one in 40 million.

What is VWM:

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 has some speech delays. As the disease progresses Reed could/will lose the ability to use his hands, lose his ability to talk, swallow, see, and hear, and will eventually cause organ failure and death. A bump to 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. We are excited to say that in June of 2021, a first-of-its-kind human clinical trial started in Amsterdam testing a drug called Guanabenz and in April 2023 a second human trial started in Utah testing a brand new drug ABBV-CLS-7262. The biggest problem we face is funding and speeding up the progress of this research which comes at a very high cost. 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.