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Find a Cure for VWM Leukodystrophy's Fundraiser:

Find a Cure for VWM

Find a Cure for VWM's Photo
Find a Cure for VWM's Photo
 

VWM Rare yet Everywhere
March 22, 2017

Vanishing White Matter (VWM) is a genetic neurodegenerative disease, with less than 1,000 cases reported around the world. The “white matter”  See more

BENEFITING: American Friends of Tel Aviv University

HOURS PLEDGED: 200

Find a Cure for VWM Leukodystrophy

THE STORY:

Note: donations made through crowdrise are tax deductible - Crowdrise distributes donations straight to AFTAU.- Every quarter AFTAU sends money to TAU for Prof. Orna Elroy-Stein VWM research

Can you please help us Find a Cure for VWM ?Leukodystrophy known as Vanishing White Matter Disease (VWM) is a degeneration of the brain. Currently there is no cure for VWM. We are in race against time to Find a Cure for VWM !  Time is not on our side; most children born with this genetic disease die at an early age. Research efforts are greatly underfunded and there is little awareness.

To learn more about VWM see this link : http://prezi.com/ja0r4gvbevyz/find-a-cure-for-vwm-leukodystrophy-research/

Update : September 2015 : Did you know September is #LeukodystrophyAwarenessMonth ? 

‪#‎findacureforvwm‬ ~ #WhiteMatterMatters 
Donate to Prof. Orna Elroy-Stein VWM research
via check to AFTAU
AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research
or online:https://www.crowdrise.com/FindaCureforVWM

 

Update 2/3/15: Did you know ? 

"Approximately 50% of the people affected by rare diseases are children ~
30% of children with rare disease will not live to see their 5th birthday" 
Donate to Prof. Orna Elroy-Stein VWM research and save a child's life!

Make a donation via check to AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research

or online: http://www.crowdrise.com/findacureforvwm

In advance, thank you very much for your support !

Update 11/23/14: #findacureforvwm - How would you like to help fund the research ? We have a matching donor! Mr. Cooper will match your donation on a 10 to 1 basis!! For every dollar you donate to this effort (tax deductible) https://www.crowdrise.com/finda...cureforvwm - He will match it with $10. Donate $200 and it will turn into $2200. He will do this up to a maximum of $50,000. This Holiday Season, consider using your money for presents (except for the little ones who have this disease) and donate it for research. There is no better gift you could give-ever. See More
We are desperately in need of continuing research in Dr. Orna Elroy-Stein's lab at Tel Aviv University. We need to find a solution to the deadly effects of Vanishing White Matter Disease. We are losing so many children to this horrible disease.
#givehope:https://www.facebook.com/findacureforvwm/photos/a.341520572655360.1073741832.213513405456078/254002001407218/?type=1&relevant_count=1

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

Thank you very much to ALL that have donated to AFTAU since last year. Every dollar is making a difference. Prof. Orna Elroy-Stein is truly working hard to Find a Cure for VWM. With your help, we can raise $ 35,000 and get $ 35,000 donation match. If we can come up with $70,000 it will allow Prof. Orna Elroy-Stein to greatly enhance her staff.

To make this campaign successful - https://www.crowdrise.com/FindaCureforVWM -  we need your help again ...and remember "Together we can Find a Cure for VWM" !

If everyone who has supported or donated so far asks just 5 new friends to donate $10 each in the month of June, we will reach our goal! Help us "Find a Cure for VWM" by sharing this campaign with 5 friends :

If you like this post, share it, AND comment on it, I will send you a "VWM" keychain ! Thank you for your support !!

Update: 8/20/14 ~ To learn more about VWM research see: http://www.elroystein-tau.com/research/  and see  the team:  http://www.elroystein-tau.com/team/  Your generosity is crucial to find a cure for VWM.

Update: 6/4/14 ~ We have a generous donor and he will match every dollar until we have the $70,000. If collectively we can come up with $35,000, he will match the rest so we have $70,000. Please help us raise the funds necessary to find a cure or treatment for our kids before it is too late ! Thank you for your support !

Update: 6/1/14 ~ Need your help ! In order for Prof. Orna Elroy-Stein VWM research to proceed much faster, she needs help in her lab. If we can raise about $ 70,000, she will be able to acquire Ph.D. student and a Post-doc. .

We are in race against time.......the clock is ticking.

Please join Lilly's Mission to Find a Cure for VWM  (https://www.facebook.com/Lillysjourneytofindacureforvwm) ~ make a Make a donation via check to AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research

or online: http://www.crowdrise.com/findacureforvwm

Find a Cure for VWM (https://www.facebook.com/findacureforvwm) is within our reach !

Please share this link  with your friends and family - http://www.crowdrise.com/findacureforvwm  <3

Thank you for your help and support ! Donate now and save a child's life !

Update: 4/15/14~ anonymous donor offered to make a matching donation up to $5,000.00. What this means is your donation is doubled for every $1 you give ~ it will actually be $2 from today until the fundraiser hits $ 5,420.00 !

What is VWM ?

Vanishing White Matter Disease (VWM) is a rare and degenerative brain disease belonging to a group of conditions called the Leukodystrophies. VWM Disease causes the deterioration of the central nervous systems' white matter. There is currently no cure or treatment for this awful illness. As VWM is so rare, there is minimal funding available to continue researching a cure. The average life expectancy of VWM patients is 5-10 years from onset of the disease.

I was once unaware about VWM. I never heard of the disease and did the thought of it ever affecting my life never even cross my mind. But then in 2009, my niece was diagnosed with VWM Leukodystrophy, and ever since that moment I’ve been searching the web like crazy, day and night, trying to help my sister save her daughter. I can still remember clearly the day my sister told me about the MRI results, and how they showed signs of Leukodystrophy. I was devastated, and the more I read about Leukodystrophy the more horrified I would get. My heart sank when in one article I read stated, “These disorders are progressive, meaning that they tend to get worse throughout the life of the patient”.

While there is research currently being conducted, there are no treatment options available for VWM disease. Prof. Orna Elroy-Stein from Tel-Aviv University is one of the few researchers in the world studying VWM disease. She is focused on research surrounding VWM disease and finding a cure for VWM. The process of finding a cure is very tedious and expensive, and consists of several phases. Scientific research is like putting together a huge jigsaw puzzle. It takes months and sometimes years. Currently however, there is no major funding dedicated to VWM research. Without funding there is no hope for a cure, which is why I’ve decided to stop waiting for an answer and put matters into my own hands. I can’t be a scientist finding a cure, so this is what I have to do, raise the money to fund the science. It’s what we all have to do. We don’t have a choice! We’re doing this not just for my niece, but for all kids with VWM. We’re at war with this disease.

My dream is that science and research makes VWM a condition people can live with. I want everyone with VWM to have the ability to live a full, meaningful life. That would be a gift!

They say " money can't buy you happiness" but when it comes to research money can help Prof. Orna Elroy-Stein to Find a Cure for VWM ! ....~ "The more money is restricted to VWM research.... the more projects researchers can run. Money allocated to VWM will keep Prof. Orna Elory-Stein working towards finding a cure and it will minimize her stress to find research funding. Prof. Orna Elroy-Stein is determine to find a cure for VWM and donations, through the American Friends of Tel Aviv University (AFTAU), are vital to ensuring VWM research can continue. This is because grants do not cover the full costs of research, especially the purchase of equipment vital to VWM research.

Thank you for reading this post, spreading Leukodystrophy awareness and being a citizen scientist !

Without your support Prof. Orna Elroy-Stein and her team would not be able to do their work. Every gift makes a difference. Thank you!

 Funds + Research = Find a Cure for VWM = HOPE!

Checks can also be sent to AFTAU:

Make a donation via check to AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research

To spread awareness see: https://www.facebook.com/findacureforvwm

and see this link : http://southtownstar.suntimes.com/photos/galleries/index.html?story=21752529

 

 

 

DONATE

To This Fundraiser

$111,030

MONEY RAISED
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  • Courtney & Pat Nussbeck

    $50

  • Grant's Cause

    $100

  • Kalwei's Family

    $100

  • Brad and Melissa Schmidt

    $50

  • Jeff & Beth Burkitt

    $100

  • Ghent, Jennifer, Chance, Aza & Kali Weyer

    $250

  • Anonymous

    $25

  • Paul, Michele, Chance & Dalton Black

    $100

  • Anonymous

    $25

  • Anonymous

    $100

  • Anonymous

    $50

  • Anonymous

    $100

  • Steve and Susan Korth

    $25

  • Rachel Finnell

    $50

  • Ah Ah, Lisa and Nick

    $250

  • Pilar Wiley

    $50

  • Emily Vaughan and family

     

  • Anonymous

    $100

  • Megan and Bryon Whitman

    $50

  • Raymore Elementary/Early Childhood

     

  • Tammy Conner

    $50

  • Porter and Kay Leffingwell

    $100

  • Neila Terrell

    $50

  • Anonymous

    $100

  • Jim & Carrell Smart

    $100

  • Trisha Morris

    $25

  • Jennifer & Gary Herald

    $100

  • Find a Cure for VWM Leukodystrophy

    $25

  • Williams Family

    $100

  • Nancy Finnell

    $100

  • Wyoma

     

  • Find a Cure for VWM in honor of Savannah

    $25

  • Anonymous

    $200

  • Your SC Family

     

  • donna skwirut

    $100

  • Grandma and Grandpa Mealhow

    $75

  • Scott Peters

    $10

  • Liz and Larry Dresser

    $50

  • Jessy Hueneke

    $25

  • Julie Zenel

    $10

  • Carlee Dove and family

    $25

  • Kayla Preece

     

  • Aunt Halsey

    $75

  • Ron & Stephanie Finnell

    $50

  • Rachel Finnell

    $25

  • Anonymous

    $50

  • Babette Kimball

    $50

  • Anonymous

    $25

  • Kim & Keith Villhauer

    $100

  • Hank and Debbi Howard

    $1,500

  • Caitlin

    $150

  • John & Robin LaBar

    $500

  • Ken & Carri Grieb Family

    $100

  • Jaclynn Drigen

    $90

  • Al and Donna Osmin

    $1,000

  • Mark and Jodi Mascall

     

  • A Friend

    $1,500

  • Patti & Dave Allstott

    $50

  • Russ, Betty Hickerson and Michael, Sarah and Beckett Skow

    $100

  • Jim & Mona Crow

    $500

  • Brunk Family

    $50

  • A ConMet supporter

    $100

  • Mike and Teresa E.

    $100

  • J Andrew Johnson

    $25

  • Pic

    $500

  • Blue Skies Pediatric Therapy

    $100

  • Gurkin family. ATW

    $500

  • Pam and Mark Wunderlich

    $300

  • Stephanie Lubick

    $10

  • Caley

    $100

  • Jason Altwies

    $75

  • Anonymous

    $250

  • Anonymous

    $100

  • Evan and Annie Weygandt

    $100

  • Rachel Schonbachler

    $25

  • Mike, Nicole, Jaiden & Blane Mahoney

    $50

  • Craig & Tami Hodnefield

    $500

  • Michael Schonbachler

    $250

  • Leah Johnson

    $25

  • The Nico's

    $25

  • Dues

    $25

  • Julio

    $25

  • Anonymous

     

  • Chris Sykes

    $100

  • Don and Karen Taylor

    $100

  • Anonymous

    $100

  • John and Robin LaBar

    $250

  • Terry & Lori

    $100

  • Frank and Vicky Wood

    $1,000

  • Sarah Becker

    $25

  • Oregon friends!

    $500

  • Sharon De Greiff

    $125

  • ANONYMOUS

    $5,000

  • Corey Miller Family

    $175

  • Find a Cure for VWM

     

  • Anonymous

    $220

  • Kyle Quick

    $25

  • Melissa Robillard / Snowball's Great Adventure

    $50

  • Anonymous

    $50

  • Catrin

    $20

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22% Raised of $500,000 Goal

Fundraise for this Campaign

The Team: $111,030 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Find a Cure for VWM Leukodystrophy

Amount Raised

$68,411

 

14% Raised of $500,000 Goal

Fundraiser Title

Bethany Jones

Amount Raised

$13,916

 

278% Raised of $5,000 Goal

Fundraiser Title

Rachel Schonbachler

Amount Raised

$10,560

 

1056% Raised of $1,000 Goal

Fundraiser Title

Erika Mealhow-Havlik

Amount Raised

$8,760

Fundraiser Title

Sam vs VWM

Amount Raised

$3,761

Fundraiser Title

Alexis Conrad

Amount Raised

$3,275

Fundraiser Title

Angel Gallegos

Amount Raised

$1,110

Fundraiser Title

Sweet and Spunky Savannah

Amount Raised

$575

Donor Comments

Catrin

Catrin

DONATION: $20

Alice Roath 2 weeks ago

Anonymous

ANONYMOUS

DONATION: $50

Happy B-day Uncle Wally! 1 month ago

Kyle Quick

Kyle Quick

DONATION: $25

3 months ago

Anonymous

ANONYMOUS

DONATION: $220

Thanks for the memories, buddy. 3 months ago

Find a Cure for VWM

Find a Cure for VWM

Happy 12th B-day Aoife! 3 months ago

Corey Miller Family

Corey Miller Family

DONATION: $175

3 months ago

ANONYMOUS

ANONYMOUS

DONATION: $5,000

4 months ago

Sharon De Greiff

Sharon De Greiff

DONATION: $125

4 months ago

Oregon friends!

Oregon friends!

DONATION: $500

4 months ago