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Cure GM1 Foundation's Fundraiser:

Cure GM1 Foundation

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Giving Tuesday 2016
November 29, 2016

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THE STORY:

The Cure GM1 Foundation was founded by Christine Waggoner and Douglas Dooley.  This 501(c)(3) was created in an effort to save their sweet daughter Iris’ life and to save the lives of all those affected by GM1 Gangliosidosis.  GM1 is a rare and fatal neurological disease that primarily affects babies and children.  Some might describe the condition as a pediatric disease with elements of Alzheimer’s and ALS/Lou Gehrig's disease.

GM1 is most devastating because at first, those born with the disease appear to develop normally.  Over time, loss of skills, and regressions arise.  A baby will suddenly lose muscle tone.  A child may appear clumsy and begin to stutter.  The affected struggle to find a diagnosis.  Worse, upon diagnosis,  families learn that GM1 is degenerative and deadly.  Children face the grim reality of no treatment other than symptom management.

These children ultimately suffer the loss of all bodily function as GM1 destroys their central nervous systems, organs, and bones.  GM1 obliterates the most basic of bodily functions, causing blindness, deafness, complete paralysis, and uncontrollable seizures.  Many of the infants perish in the first two years of life.  Parents are told to take their children home, to love them, and to let them die. 

The Cure GM1 Foundation strives to save the lives of all those affected by this wretched condition.  After decades of GM1 research, a cure may finally be within reach.   Yet, treatments languish in pre-clinical stages.  Worse these treatments may  be completely abandoned due to lack of funding.

Promising treatments already exist in the form of enzyme replacement therapy, pharmacological chaperones, and gene therapy.  Cure GM1 is in direct contact with researchers in Europe, Asia, Canada and the United States.  UMass Medical School, Auburn University, and the National Institute of Health are all involved in an extremely promising pre-clinical gene therapy program.

Given sufficient funding, a cure for GM1 could come in the very near term, even as soon as 2017.  However, without financial support, these treatments will never progress to human clinical trials.

The Cure GM1 Foundation’s goal is to raise $2 million dollars to put an end to this horrible disease.   To date, the foundation is nearing having already raised nearly $1M.   A cure for GM1 would serve all humanity and generations to come.  Such a treatment would engender advances in many diseases and have broad ramifications across medicine and science. 

Each day is a new beginning, but this battle is a race against time. This disease is relentless and cruel.  Rare diseases and this category of conditions afflict far too many people.  Every life matters.  The clock is ticking.  

Contribute now to this incredibly urgent mission today.  We must make every possible effort to shield children and all humanity from the excruciating pain and suffering caused by GM1 and diseases like it.    Make a stand today for HOPE,  knowing that these treatments are so very close to saving lives.  Your contribution will make a cure a reality.

All donations are tax-deductible.   

The Cure GM1 Foundation is the only nonprofit 501(c)(3) entirely dedicated to GM1 Gangliosidosis.  Cure GM1 has no paid employees.

 

To learn more, please see: 

http://www.curegm1.org

http://www.sweetiris.org

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