Precious Natalie

Find a Cure for VWM
Feb 7, 2017 · 2 min read

“What we have once enjoyed and deeply loved we can never lose, for all that we love deeply becomes a part of us” …..In loving memory of Natalie Grace

Natalie was born August 27, 2014 — diagnosed with vanishing white matter disease (VWM) in 2015 + earned angel wings February 6, 2016

Natalie’s mom says: “My daughter was the light in my life. She was and still is the best thing I have ever had the honor of doing. She was my mini-me.

She brought so much joy to our lives even with her disease, she was so strong. She fought so hard against this rare disease and I hope one day there is a cure to save other children from the same fate. My daughter was one of a kind; sassy, smart, and beautiful. How I wish I could have seen her grow up but this disease robbed her of that.

My one wish now is that we find a cure in time for the other children that are affected. There is no reason for a parent to lose a child. All we need to do is raise money to fund the race against time so please in honor of my daughter and all others affected donate to help us find a cure.”

Written by Natalie’s mom.

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 transmission of brain signals to the rest of the body. VWM primarily affects children and is untreatable, incurable and terminal.

Small amounts of money can have outsized impact in the world of‪#‎VanishingWhiteMatterDisease‬ (VWM). Because ‪#‎leukodystrophies‬ are so rare, therefore research relies heavily on private donations. Even if it’s a small amount, please consider donating:

1) http://www.savingchloesaxby.com/
2) Crowdrise — Findacureforvwm
3) By check to : AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research

***Note: All 3 ways above go directly to Prof. Orna Elroy-Stein VWM research ****

or donate to VWM Families Foundation — http://vwmff.org/donate/

Money raised by the VWM Families Foundation helps fund existing research projects and supports families living with VWM.

If you cannot make a donation, you can help by sharing this message with family and friends . With Awareness + Funds = Research and with Research the possibilities are limitless !!

Leukodystrophy Awareness

Raising Leukodystrophy Awareness while searching to find a cure for Vanishing White Matter Disease (VWM) -VWM is a rare genetic disorder that results from mutations in a gene known as EIF2B.

Find a Cure for VWM

Written by

It is all about raising awareness for leukodystrophy called vanishing white matter disease (VWM) ~ while searching to find a cure...!

Leukodystrophy Awareness

Raising Leukodystrophy Awareness while searching to find a cure for Vanishing White Matter Disease (VWM) -VWM is a rare genetic disorder that results from mutations in a gene known as EIF2B.

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