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Marjorie Trew-Munson's Fundraiser:

Lucy's Hope for a Cure

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Marjorie Trew-Munson via Crowdrise
August 08, 2010

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Marjorie Trew-Munson

THE STORY:

Last year I learned that my friend Barb's daughter, Lucy, was born with a genetic disorder called Spinal Muscular Atrophy. Lucy has type 1 SMA (the most severe). Lucy's diagnosis means she may only live to be 2 years old. She cannot move her legs unless suspended or in water. She cannot support her own head or sit up on her own, and never will. She uses a machine to cough for her, because she cannot do it on her own. She also needs a machine to help her breathe when she sleeps, and may eventually need it when she's awake. Lucy cannot eat anything by mouth because she cannot swallow properly and will aspirate it into her lungs. A simple respiratory illness is life threatening for Lucy. Despite all this she is still playful and happy, loves being read to and taking baths, singing to her stuffed animals and playing with her toys, with help from Barb and Noah.

The Gwendolyn Strong Foundation was set up by Victoria Strong and her family after the diagnosis of their daughter Gwendolyn with SMA. The Gwendolyn Strong Foundation is a 501(c)(3) nonprofit organization focused on increasing awareness of SMA and accelerating research towards a cure.

As stated before, Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common, but publicly unknown disease: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. It is a degenerative disease, and the number 1 genetic killer in babies under 2 years old.

In addition, the SMA translational research approach used by researchers is now considered a viable research "model” with the potential for enormous benefit to millions of people impacted by other diseases, including ALS/Lou Gehrig’s, Alzheimer’s, Parkinson’s, Duchenne Muscular Dystrophy, Fragile X, and Tay Sachs Sandhoff, among others. So much is known about SMA and by finding a treatment and cure for it, the pathway to treatments and cures for many other diseases will become infinitely more attainable.

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To This Fundraiser

$125

MONEY RAISED
  • Elizabeth

    $50

  • aunty m

    $25

  • Jeanne Trew

    $50

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13% Raised of $1,000 Goal

Fundraise for this Campaign

The Team: $125 TOTAL RAISED SO FAR

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Donor Comments

Jeanne Trew

Jeanne Trew

DONATION: $50

6 years ago

aunty m

aunty m

DONATION: $25

for Lucy, and a healthy life 6 years ago

Elizabeth

Elizabeth

DONATION: $50

6 years ago