VWM Familes Foundation

The VWM Families Foundation supports awareness, research efforts and families suffering with Vanishing White Matter disease (VWM).

[VWM Familes Foundation @VWMFamilies]

The @VWMFamilies Rare Disease Day Virtual 5k is only 2 weeks away!
Click below to register to walk, run or bike, indoor or outdoor, from wherever you are on February 28th. All proceeds fund research & clinical trials to find a treatment for VWM.

https://t.co/iLxqOaPNPU

[Sam VWM @SamvsVWM]

Today's Sam-ism. "I love being disabled. It's so fun! Fun, fun, fun!" Said no one ever, except Sam. People wonder how we can cope with a disabled, terminally ill child. This is how. How can we get upset by Sam's limitations if he doesn't?

[Allyson Buck @DosyB]

An article I wrote about travelling with Sam for Travel Without Limits, an Australian magazine that is exclusively about tavelling with disabilities.
https://t.co/6LOxtM9FiG

[VWM Familes Foundation @VWMFamilies]

@MissDBurke hats have been a huge success (some people even sleeping with theirs). A website for online sales and shipping is in the works, we will be launching within the next few weeks as soon as we have enough… https://t.co/BcFwe7RqTg

[VWM Familes Foundation @VWMFamilies]

https://t.co/AavXkuDgvs

[Sam VWM @SamvsVWM]

Sam's list of people he loves. @NiallOfficial came in first, his friends second and family a distant 3rd. 😂

#vwm #vwmfamiliesfoundation #vwmff #livingwithaterminalillness #RareDisease #NiallHoran #superfan #Leukodystrophy #vanishingwhitematterdisease

[VWM Familes Foundation @VWMFamilies]

2019 was an exciting year for the VWM community.
The first meeting of a consortium of VWM doctors met in December in Amsterdam to form a group to regulate VWM clinical trials. At present, several pharmaceutical… https://t.co/Cg1EcQRwHz

[VWM Familes Foundation @VWMFamilies]

https://t.co/dk43fy2yqR

[The Calliope Joy Foundation @caljoyfndtion]

3-year-old boy dies following courageous battle with rare genetic disease https%253A%252F%https://t.co/IexVSuXDv5%252Fnews%252F3-year-old-boy-dies-following-courageous-battle-with-rare-genetic-disease%252FGKT6L7OJTNBC5G35AERTAVOKUM%252F

[Sam VWM @SamvsVWM]

"No matter how much they raise, however, the families know they must always temper their expectations.

It’s a long and often heartbreaking path from early glimmers of hope in a lab to actual therapies that help patients in the clinic."
https://t.co/0LtcZaw8XP

[Sam VWM @SamvsVWM]

Hawaii bound. State #44 here comes Sam!

#samseesall50states #state44 #hawaii #samvsvwm #vwm #vanishingwhitematterdisease #leukodystrophy #findacureforvwm #vwmff #vwmfamiliesfoundation… https://t.co/p7J6575f2S

[Sam VWM @SamvsVWM]

Mismatched-shoe day to benefit Greenwich youngster https://t.co/YHfKoXM04x via @GreenwichTime

[Marc J. D'Amico @MJDAmico_GPS]

A heartfelt thanks to everyone who came out to support Sam Buck this afternoon at the 2nd annual Rare Disease Day Virtual 5k in Bruce Park. @DrJillGildeaGPS @GreenwichpsCIPL @GlenvilleCTAP

[TODAY @TODAYshow]

WATCH: Family races to help 2 sons who could die of rare disease by age 10

[OGSAdministration @OG870Leaders]

Raising money for VWM disease and making kids happy. A great day at OGS @SamvsVWM @WMSadmin you’re next Western

[VWM Familes Foundation @VWMFamilies]

May 16, 2017 - Almost 200 runners and $10,000 raised for the VWM Families Foundation before breakfast. Thanks @siriusdecisions

[VWM Familes Foundation @VWMFamilies]

VWM Families Foundation is crowdrising for Buffalo Marathon & Half-Marathon for the VWM Families Foundation: https://t.co/j7hawICD5P

[VWM Familes Foundation @VWMFamilies]

Wonderful story about Noah & Gracie, siblings with VWM in Northern Ireland. https://t.co/A3MAXcpym9

[VWM Familes Foundation @VWMFamilies]

If anyone is interested in running the Buffalo Marathon or Half Marathon for the VWM Families Foundation on May 28th please message us!

[VWM Familes Foundation @VWMFamilies]

Huge thank you to everyone at John Ehrhardt Elementary who raised $5,312.43 at the Run 4 Laila event for the VWM Families Foundation!