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Erika Mealhow-Havlik's Fundraiser:

Find a Cure for VWM

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Dooms Day - November 1st
November 18, 2016

I wrote this post on November 1, 2016: November 1, 2014 is now knows as dooms day in our house. This was the day we first saw the signs of Vanishing  See more
Erika Mealhow-Havlik

THE STORY:

Reed, a three-year-old from Jesup, Iowa started his fight to find a cure for VWM on November 1, 2014. Reed was born on December 3, 2012, a normal pregnancy, a normal birth, a normal baby, a normal toddler, and then, on November 1, 2014, Reed went down for a nap and when he woke, he struggled to stand and take steps. He was falling a lot and whining, not crying, but frustrated. The family continued to watch him struggle and noticed his right foot turning in. After no clear answers as to why this was happening, Jesse, Erika and Reed headed for Iowa City to see a neurologist.

On February 25, 2015, Reed was diagnosed with Leukodystrophy and then Vanishing White Matter. 

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. 
Let's work together to change this.


Stay up to date with Reed atwww.teamreedcrosby.blogspot.com

Can you please help us Find a Cure for VWM ?

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

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

"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" 

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.

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.

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 we’ve decided to stop waiting for an answer and put matters into our own hands. We can’t be a scientist finding a cure, so this is what we 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 our son, 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!

 

 

DONATE

To This Fundraiser

$8,860

MONEY RAISED
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  • Avril

    $10

  • Anonymous

    $100

  • The Coles

    $100

  • Grandpa and Grandma Mealhow

    $100

  • Anonymous

    $900

  • Andrea Henderson

    $70

  • S&K Schmit

    $100

  • Kim & Keith Villhauer

    $100

  • Rick & Sue Heth

    $50

  • Bernice Fischels

    $25

  • Willow and Amanda Smith

    $25

  • Jessica Barber

    $10

  • Emily Aaron and Sam Harken

     

  • Shawn, Morgan, Payton, Harper

     

  • Walztoni's

    $25

  • Kirsten Olson

    $10

  • Aunt Andrea

    $25

  • Dan & Stacy Glascock

    $100

  • Jesup Public Library

     

  • Valerie Henderson

    $25

  • Reed Havlik

    $100

  • Audrey & Dale Steffen

     

  • Jill and Josh Waddle

    $25

  • Steve & Abby Waldschmitt

     

  • Anonymous

    $25

  • Parker Youngblut

    $25

  • Brock, Angie, Nolan & Logan

    $25

  • Mila

     

  • Dan, Lisa & Jeremiah Weber

    $20

  • Lee Weber

    $25

  • Brittany, Joe, Kinnley, Addington

    $10

  • Cleone Abrams

     

  • Heidi & Randy Rush

    $250

  • Ryan and Kate Even

    $100

  • Trisha, Bill, Will Alivia and Lillian Hansen

    $50

  • Anonymous

    $25

  • Skwirut Family

    $100

  • Fortitude VBC

    $50

  • Anonymous

    $25

  • Grandma and Grandpa Mealhow

    $75

  • Scott Peters

    $10

  • Jessy Hueneke

    $25

  • Carlee Dove and family

    $25

  • Kayla Preece

     

  • Aunt Halsey

    $75

  • Anonymous

    $50

  • Babette Kimball

    $50

  • Anonymous

    $25

  • Kim & Keith Villhauer

    $100

  • Sarah Becker

    $25

  • Oregon friends!

    $500

  • ANONYMOUS

    $5,000

  • Pagni Real Estate

    $100

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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

Pagni Real Estate

Pagni Real Estate

DONATION: $100

6 months ago

ANONYMOUS

ANONYMOUS

DONATION: $5,000

1 year ago

Oregon friends!

Oregon friends!

DONATION: $500

1 year ago

Sarah Becker

Sarah Becker

DONATION: $25

Always praying for ya buddy!! 1 year ago

Kim & Keith Villhauer

Kim & Keith Villhauer

DONATION: $100

TeamReed ð 2 years ago

Anonymous

ANONYMOUS

DONATION: $25

2 years ago

Babette Kimball

Babette Kimball

DONATION: $50

2 years ago

Anonymous

ANONYMOUS

DONATION: $50

2 years ago

Aunt Halsey

Aunt Halsey

DONATION: $75

2 years ago

Kayla Preece

Kayla Preece

Michaiah Martin 2 years ago