In 2013, our son Sam was diagnosed with a very rare, terminal brain disease called Vanishing White Matter disease.
VWM is a chronic and progressive condition, and is unusual in that periods of rapid and severe deterioration can be caused by minor head trauma, fevers and even anesthesia. Few sufferers survive more than 5-10 years after onset.
There is currently no treatment or cure, but researchers are making real progress. Though they are in desperate need of funding to ensure that their research continues.
We are running a Pie Face Challenge in September (which is Leukodystrophy awareness month) to raise money for the VWM Families Foundation which is funding this essential research.
Everyone who participates would video someone smashing a pie or plate of whipped cream in your face, post it online, nominate 3 people to do the same and donate $10 to the VWM Families Foundation. Don't forget to tag @samvsvwm & @vwmff so we can see and share your videos!
For more information on Sam see www.facebook.com/samvsvwm.