Lloyd Marcus Joins Students’ Big Give

Save Gabrielle LaVerde

From Niemann-Pick Type C

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, Early Childhood Alzheimer’s, Fox 35 Orlando

 

 

 

Website & Youtube Videos donated by  http://www.GiseleVeilleux.com    Email Web Administrator

What do we Need?

 

The kids at DLE have shown us that a Big Give needs to be creative!  Some have donated their frequent flyer miles, hotel  points, you name it!  Anything to help Gabrielle get the treatment she needs.

 

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.

Click here for more information about DLE’s Big Give!

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

By paypal on Gabrielle’s Website or directly to Sun Trust Bank

Attn:  Jessica for Gabrielle LaVerde / 2602 Enterprise Road / Orange City, FL 32763

1-800-786-8787 or 386-775-8878

 

To Learn More about Gabrielle visit

http://www.GabrielleLaVerde.com or email GabrielleLaVerde@earthlink.net

 

FOR INTERVIEW Contact Family Spokesperson:

Gisele Veilleux 386-532-5237 / 407-256-5960

giseleveilleux@earthlink.net

 

###

DLE’s Big Give !

 

Deltona Lakes Elementary School                 $10,500

Organizations that joined DLE and contributed to their Big Give include:

 

· Supra Telecom, Winter Park, FL

· Hispanic American Youth Group of Deltona, FL

· Bubba Gump Shrimp Co., Daytona Beach, FL

· Deltona Professional Fire Fighters, Deltona, FL

· IKEA of Orlando, FL

· Hairmasters of Orange City, FL

· Curves, Orange City, FL

· J.C. Lobster Pot, Deland, FL

· CiCi’s Pizza, Orange City, FL

· Deltona Happy Tails Groomer, Deltona, FL

· SAK Comedy Lab, Orlando, FL

· Jos. A Bank (Men Clothier) Longwood, FL

· Deltona Stetson Floral, Deltona Blvd, Deltona, FL

· Focus Dance Group of Sanford, FL

· Candlelight Catering, Deltona, FL 

Big Givers

Join Students to

Fight for Gabrielle

The Big Give Continues:

 

 

Internet (PayPal) Contributors include:

The names of contributors will not be published

 

· Cocoa, FL

· Hanover, MA

· Winter Haven, FL

· Orlando, FL

· Palm Coach, FL

· St. Louis, MO

· New Zealand

· Las Vegas, NV

· Kingston, GA

· Longwood, FL

· Herndon, VA

· Jacksonville, FL

· Sanford, FL

· Deltona, FL

· Winter Springs, FL

· Bakersfield, CA

· Daytona Beach, FL

The death of one child is a tragedy,

the death of a thousand is a statistic.

 

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.

The Big Give Continues:

 

 

Businesses that have donated their services:

 

· Kinkos, Altamonte Springs, FL

· Express Printing, Deland, FL

· Total Image Signs & Graphics