Central Florida Unites to Save Dying Child |
From Niemann-Pick Type C |
Save Gabrielle LaVerde |
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This rare and deadly disease that attacks young children between the ages of 6—10 years of age. There is no known cure for Niemann-Pick Type C, and once diagnosed, children die within a very short time. Diagnosis of Niemann-Pick itself, in some cases, takes years, as was the case for little Gabrielle LaVerde. Here is a list of certain key search words used when trying to identify this rare and deadly disease that attacks young children between the ages of 6—10 years of age. Niemann-Pick Disorder, Niemann-Pick Disease, Niemann-Pick Type C, Neimann-Pick Disorder, Neimann-Pick Disease, Neimann-Pick Type C, NP-C, Gabrielle LaVerde, Niemann-Pick is also known as childhood Alzheimer’s disease. Gabrielle’s Gift, cholesterol, metabolism, genetic, metabolic, lipids, neurological, life expectancy, speech, gait, developmental, delay, cerebral palsy, occupational therapy, behavioral, neurologist, pediatrician, geneticist, EEG, MRI, CT scan, seizure, medication, Orlando, Florida, Neuro Muscularist, Kennedy-Krieger, Johns Hopkins, Movement, Disorder, Neurology, Baltimore, Degenerative, Disease, Brandon, skin biopsy, stem cell, stem cell research, regenerative medicine, cytotherapy, amniotic stem cell, fatal, terminal, Ara Parseghian, Addi Hempel, Cassi Hempel, Dana’s Angel Research Trust, Jessica Leoni, Kevin Eadie, Jacob DeMeis-Dullea, Luke Liegghio, Race for Adam, Ty Quandt, Ashkenazi,
Website & Youtube Videos donated by http://www.GiseleVeilleux.com Email Web Administrator |
What do we Need?
We are hoping that we can find a Printing company to help us print flyers, a T-shirt company to make t-shirts for our supporters and volunteers to help spread the world, and a company that will make simple bumper stickers for our community.
We also need more photos or video of the fund raising evening so we can include them in videos and on this webpage of that spectacular evening! Please email GiseleVeilleux@earthlink.net if you have any photos you’d like to share. |
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These kids stopped at nothing, bake sales, donating their weekly allowance, delivering their piggy banks, a yard sale that involved the entire community, special dinners, more bake sales (this school has a sweet tooth), a talent show, and a memorable spaghetti dinner yielded quite a gift for Gabrielle's trust fund. The trust acount is for her trip to receive experimental treatments in an attempt to save her life. |
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Press Release Central Florida Unites to Save Dying Child
DELTONA, FL/May 9, 2008 Immediate Release/ Contact: Lloyd Marcus 954-934-9588
It all began with 10-year old Ryan Bowling. His mom is extremely dedicated to rescuing animals. One day when she picked Ryan up from school, he asked her an important question. “Mom, isn't saving the life of a kid more important than saving the life of a dog?” Ryan's question caught Gisele, his mom, off guard, but she replied, “Of course!”
Ryan told her about Gabrielle LaVerde, a 1st grader who attends his school. Gabrielle has been diagnosed with a rare fatal disease called Niemann-Pick Type C (Early Childhood Alzheimer's). Life expectancy after diagnosis is 6-10 years. Only 300 Americans have been diagnosed with this disease. Only 500 cases are known world wide. Niemann-Pick Type C is a genetic metabolic disease and causes multiple neurological disorders. Ryan ordered his mom to “Get to work!”
Gabrielle's treatments run $9,000 per month. Her parents are planning to take her to Mexico for an experimental treatment. The treatment cost $19,000. Airfare, accommodations, car rental, food, and incidentals will cost approximately $5,000.
Fund raising for Gabrielle began with her schoolmates at Deltona Lakes Elementary School, Deltona, Florida. Through a talent show, spaghetti dinner, and numerous other fund raisers, DLE raised $10,500.
Friends of Gabrielle have asked me to help take the fund raising to the next level. I'm challenging Central Florida to come together as a family and rally around the LaVerde family and their adorable little girl. Do your own creative fund raiser for Gabrielle. Let's work together to SAVE GABRIELLE LAVERDE.
Please raise funds throughout the summer. Before school begins, the LaVerde family will be presented with a check from “Central Floridians for Gabrielle” at a press conference. Location & date TBA. Press conference will include recognition of major contributors, music, and celebration festivities.
Please mark your contribution: “Central Floridians for Gabrielle.”
Contribute to GABRIELLE'S TRUST ACCOUNT |