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Alexis Conrad's Fundraiser:

Find a Cure for VWM

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Alexis Conrad

THE STORY:

Donna Skwirut wrote -

Can you please help us Find a Cure for VWM ?

http://prezi.com/ja0r4gvbevyz/find-a-cure-for-vwm-leukodystrophy-research/

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 ad 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:

9715 Woods Drive, #1608
Skokie, IL 60077

Attn: Rick Kruger/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

$3,275

MONEY RAISED
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  • Joel

    $50

  • Love4Laila Run4Laila

    $2,000

  • kelly carr

     

  • Help-U-Sell Sunrise Real Estate

    $25

  • Auntie Jess

    $50

  • Ron & Renee Conrad

     

  • Uncle Dennis

    $100

  • Biggs

    $25

  • The Crouse Family

    $100

  • The Ninos

    $20

  • Mederos family

    $10

  • Casey & Shereen

    $25

  • Willie and Andrea Flora

    $25

  • Maddy & Atlee Van Exel

    $500

  • Parsegh & Claire Oksayan

     

  • Liz and Larry Dresser

    $50

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Fundraise for this Campaign

The Team: $112,455 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Find a Cure for VWM Leukodystrophy

Amount Raised

$69,711

 

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

$8,860

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

Liz and Larry Dresser

Liz and Larry Dresser

DONATION: $50

for Laila 2 years ago

Parsegh & Claire Oksayan

Parsegh & Claire Oksayan

We love you!! 3 years ago

Maddy & Atlee Van Exel

Maddy & Atlee Van Exel

DONATION: $500

We love you Laila 3 years ago

Willie and Andrea Flora

Willie and Andrea Flora

DONATION: $25

we love you sweet Laila!! 3 years ago

Casey & Shereen

Casey & Shereen

DONATION: $25

3 years ago

Mederos family

Mederos family

DONATION: $10

3 years ago

The Ninos

The Ninos

DONATION: $20

3 years ago

The Crouse Family

The Crouse Family

DONATION: $100

We love you sweet girl 3 years ago

Biggs

Biggs

DONATION: $25

3 years ago

Uncle Dennis

Uncle Dennis

DONATION: $100

Love You !!!! 3 years ago