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Leukodystrophy Awareness

I Love Two Who Are Rare

I Love Two Who Are Rare

A year ago from today, on Rare Disease day, we lost our sweet Jake at 4:02 a.m, Feb 28, 2020.

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Feb 28, 2021

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…

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Nov 13, 2020

Dapper Dax

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

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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).

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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…

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Sep 7, 2020

Latest

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…

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Sep 6, 2020

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…

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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…

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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…

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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.

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Sep 20, 2018

VWM Art Auction

VWM Art Auction

About Our Auction

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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…

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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

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