Sign in Get started

Leukodystrophy Awareness

Little Darling Aria

Little Darling Aria

Aria was born on 5–10–2019, alongside her twin brother Axel. Aria’s life started off by achieving normal milestones as you would expect in…

Find a Cure for VWM

Nov 13, 2020

Dapper Dax

On November 30, 2015, we welcomed our perfect, seemingly healthy baby boy into the world.

Find a Cure for VWM

Sep 30, 2020

Loving Siblings: Gabriel and Letícia

Loving Siblings: Gabriel and Letícia

Gabriel is 8 years old and Letícia 5 years old, both are bearers of Leukodystrophy, Vanishing White Matter Disease (VWM).

Find a Cure for VWM

Sep 13, 2020

Princesa Lara

Lara is a charming three-year-old girl. She was diagnosed with vanishing white matter disease (VWM) in 2019 at two and a half years old…

Find a Cure for VWM

Sep 7, 2020

HENRIQUE NETO STORY OF LEUKODYSTROPHY OF VANISHING WHITE MATTER from MANAUS/AMAZONAS/BRASIL

HENRIQUE NETO STORY OF LEUKODYSTROPHY OF VANISHING WHITE MATTER from MANAUS/AMAZONAS/BRASIL

On October 4, at school, he had 6 seizures, being referred to an emergency hospital, where he remained in hospital for 45 days performing…

Find a Cure for VWM

Sep 6, 2020

Latest

Noah The Real Superhero

Noah The Real Superhero

We first noticed that something wasn’t quite right when Noah started walking, he would complain of pain in his legs and wake up at night…

Find a Cure for VWM

Jul 18, 2019

My Dearest Matthew

My Dearest Matthew

Matthew was born on 14th November 1989. He was a good weight and all early developmental milestones were met. At around the time of his…

Find a Cure for VWM

Jan 9, 2019

Sweet Baby Vance

Sweet Baby Vance

As a father, all you want to do is provide for and protect your family. There is a welcome ignorance to the dangers in life, the fact that…

Find a Cure for VWM

Sep 27, 2018

Tadan’s Journey

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

Sep 20, 2018

VWM Art Auction

VWM Art Auction

About Our Auction

Find a Cure for VWM

Sep 27, 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…

Find a Cure for VWM

Sep 6, 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…

Find a Cure for VWM

Mar 30, 2017

Alice: One of a Kind

Alice: One of a Kind

So the time has come for me to finally put pen to papering write Alice’s story. I have tried on many occasions over the past three years to…

Find a Cure for VWM

Mar 29, 2017

About Leukodystrophy AwarenessLatest StoriesArchiveAbout MediumTermsPrivacy