Brave and Beautiful Emerson

has a sister to lean on ….

Emerson’s Mom says: “September is Leukodystrophy awareness Month, and since I don’t talk about it often, my oldest has a form of Leukodystrophy…there are many types.

Hers is called Vanishing White Matter Disease (VWM). It is terminal, it is progressive, there is NO CURE, there is not enough funding. However with the funding that IS there- the doctors are making amazing progress. So see the two beautiful girls in the picture, together they are fighting this battle: one to support her sister — and unknown to her to fight for her family someday as she carries the gene! Please find out more about Leukodystrophy: Vanishing White Matter Disease (VWM)and visit #findacureforvwm.

Be Like Charlotte ! …If Charlotte was 100 years old. “When I’m 100 I think I will look young and be wearing a lab coat. When I’m 100 I will study dreams. I will cure VWM and cancer. I want to have long hair. When I’m 100 I will wear high heels. I would have brown hair.”
She’s got big dreams. #bigdreams#findacureforvwm #sheisamazing

Donate if you can. The ice bucket challenge raised millions…please help us raise millions for VWM.”

Written by Emerson’s mom.

September is Leukodystrophy Awareness Month. Do something. Take action..Share this post, talk about it with your friends and family, or donate time, love or money to a cause. Just be aware and create a little action — what you can, when you can. These kids need our help.

To learn more about VWM : http://ulf.org/vanishing-white-matter-disease

To donate: https://www.crowdrise.com/FindaCureforVWM/fundraiser/jaimeroyer

To read about Prof. Orna Elroy-Stein research : http://www.elroystein-tau.com/

To spread awareness see : Find a Cure for VWM and Lilly’s Mission to Find a Cure for VWM

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