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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, Early Childhood Alzheimer’s, Fox 35 Orlando
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Save Gabrielle LaVerdeFrom Niemann-Pick Type C |
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. |
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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 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
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Press Release Central Florida Prepares Big Give to Save Dying Child
DELTONA, FL/May 15, 2008 Immediate Release/ Contact: Lloyd Marcus 954-934-9588
After a local elementary school raised over $10,500 in just a few months for their classmate, Central Florida is preparing to join them in the fight to save a 6 year old student, Gabrielle LaVerde. Tucked away, in-between Daytona Beach and Orlando, an elementary school, called Deltona Lakes Elementary, which consists of 1,005 students, worked non-stop in raising awareness and collecting donations for their fellow classmate. Their fund raising ideas were creative, yet simple, and were referred to as DLE’s Big Give.
DLE’s Big Give all started with the students standing in line at the front office every morning with their piggy banks, weekly allowances, and coin jars. Once the students had raised several thousand dollars, the students solicited the help of their parents and neighbors. What followed was bake sales, talent shows, a community yard sale, and a spaghetti dinner that had profound results.
The news of the elementary school’s Big Give and this rare and fatal disease got the attention of Fox 35 News. Click Here to see the interview that was aired May 10, 2008:
Gabrielle LaVerde, a 1st grader, who attends DLE, 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 worldwide. Niemann-Pick Type C is a genetic metabolic disease that causes multiple neurological disorders.
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.
Friends of Gabrielle have asked Lloyd Marcus to help take the Big Give to the next level. Mr. Marcus is challenging Central Florida to come together as a family and rally around the LaVerde family and their adorable little girl. “Do your own creative Big Give for Gabrielle. Let's work together to SAVE GABRIELLE LAVERDE,” he said.
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 and date TBA. Press conference will include recognition of major contributors, music, and celebration festivities.
National and Corporate Contributors are welcome to join this community effort.
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 at: http://www.GabrielleLaVerde.com or email GabrielleLaVerde@earthlink.net
FOR INTERVIEW or contact information, contact Family Spokesperson: Gisele Veilleux 386-532-5237 or 407-256-5960 or GiseleVeilleux@earthlink.net
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Press Release City’s Mayor Delivers Proclamation Honoring Deltona Lakes Elementary School
DELTONA, FL/May 21, 2008 Immediate Release/ Contact: Lloyd Marcus 954-934-9588
Lloyd Marcus, accompanied by parents and students of Deltona Lakes Elementary School, and their classmate Gabrielle LaVerde, requested community involvement at the Deltona City Commission Meeting on May 19th, 2008.
While addressing the Mayor and the City Commission, Marcus called upon all Deltona citizens to create their own fund raising efforts and join the students in saving Gabrielle LaVerde. Marcus called on every soccer team, every baseball team, every bar, and every church to do a fundraiser for Gabrielle.
Before the meeting adjourned, Commissioner Michele McFall-Conte suggested the city present a proclamation to the students that would create a Deltona Lakes Elementary School Day, to honor their fund raising efforts to save their dying schoolmate.
On May 20th, Mayor Dennis Mulder’s office contact the school to announce their desire to deliver a proclamation that would create an official DLE day. However, Mayor Mulder is also planning to throw the students a pizza party at DLE on May 27th. The pizza party, Mulder explained, would be a way for the City of Deltona to honor the students, and create awareness for the cause. Brighthouse Networks has agreed to sponsor the pizza, which will be provided and delivered by Little Ceasars.
The elementary school collected over $10,500 in just a few months for their fellow schoolmate, Gabrielle LaVerde. The elementary school, which consists of approximately 1,000 students, worked non-stop in raising awareness and collecting donations for Gabrielle. The school’s fundraising ideas are being referred to as DLE’s Big Give.
DLE’s Big Give all started with the students standing in line at the front office every morning with their piggy banks, weekly allowances, and coin jars. Once the students had raised several thousand dollars, the students solicited the help of their parents and neighbors. What followed were bake sales, talent shows, a community yard sale, and a spaghetti dinner that had profound results.
Gabrielle LaVerde, a 1st grader, who attends DLE, has been diagnosed with a rare and 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 worldwide. Niemann-Pick Type C is a genetic metabolic disease that causes multiple neurological disorders.
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.
Marcus hopes the community will hold fundraisers 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 and date TBA. Press conference will include recognition of major contributors, music, and celebration festivities. Marcus hopes that National and Corporate Contributors join this community effort.
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 or 1-800-786-8787 or 386-775-8878. To Learn More about Gabrielle visit at: http://www.GabrielleLaVerde.com or email GabrielleLaVerde@earthlink.net.
FOR INTERVIEW or contact information, contact Family Spokesperson: Gisele Veilleux 386-532-5237 or 407-256-5960 or GiseleVeilleux@earthlink.net ### |