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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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Awareness

Find a Cure for VWM in Leukodystrophy Awareness

Sep 20, 2018

Tadan’s Journey

Tadan was born a normal boy. Bubbly, chunky and happy baby. He hit all milestones but never got a full run.

Find a Cure for VWM in Leukodystrophy Awareness

Sep 27, 2017

VWM Art Auction

About Our Auction

There are only 2 VWM research projects in the world, one in Tel Aviv run by Professor Orna Elroy-Stein and the other in Amsterdam run by Dr. Marjo van der Knaap. We are excited to share that both projects have made real progress and have…

Find a Cure for VWM in Leukodystrophy Awareness

Sep 6, 2017

VWM Pie Face Challenge

It’s pie face challenge time! For the month of September and October VWM Families Foundation is running a pie face challenge to raise money to fund essential research to find a cure for Vanishing White Matter disease (VWM).

Find a Cure for VWM in Leukodystrophy Awareness

Mar 30, 2017

VWM Rare yet Everywhere

Vanishing White Matter Disease (VWM) Leukodystrophy is a degeneration of the brain. VWM is one of 52 different leukodystrophies. VWM has a face around the globe. Currently there is no cure or treatment for VWM. We are in race against time to Find a Cure for VWM ! Time is not on our…

Find a Cure for VWM in Leukodystrophy Awareness

Mar 5, 2017

Family….is everything!

Family — where would you be without them?

Find a Cure for VWM in Leukodystrophy Awareness

Feb 23, 2017

Crowdfunding for Life

This Rare Diseases Day (February 28, 2017) will be a particularly hopeful one for families of children suffering from Vanishing White Matter (VWM), a rare and fatal brain disease……because “with research possibilities are limitless.”

Find a Cure for VWM in Leukodystrophy Awareness

Feb 7, 2017

I Run For Isabella

Register here —http://events.eventzilla.net/e/2018-rare-disease-day-virtual-5k-for-vwm-2138946282

Find a Cure for VWM in Leukodystrophy Awareness

Dec 15, 2016

Mighty Oaks from Little Acorns Grow

You helped make 2016 an amazing year for VWM Research! Thank You !!!

Find a Cure for VWM in Leukodystrophy Awareness

Nov 28, 2016

Angelic Asher

Meet Asher, 3 years old and full of life. He has a smile that melts hearts, he love trucks, tractors, his sisters and wants to be a cowboy when he grows up.

Find a Cure for VWM in Leukodystrophy Awareness

Oct 10, 2016

Dream...Imagine & Believe

IMAGINE … if you can:

When a child is born …parents DREAM and IMAGINE their babies walking for the first time and saying their first word. They IMAGINE their children playing sports, taking ballet lessons, graduating high school, getting accepted to college…