Darling Hannah will be the center of attention this Friday, as the student body at John C. Vanderburg Elementary School will be doing their part to raise awareness for Hannah, and millions of other children worldwide in support of World Rare Disease Day February 28, 2011. In partnership with the Global Genes Project (www.globalgenes.org), the students will be making bracelets in support of Hannah, who is the little sister of two students at the school, and who suffers from a rare disease that only affects hundreds worldwide.
Hannah has Gaucher’s Disease, which means she lacks the enzyme that allows her body to break down fat, so she goes for bi-monthly infusion treatments that prolong her life at the Children’s Specialty Center of Nevada.
The Global Genes Project launched the 7,000 Bracelets for Hope campaign that was the catalyst for these children’s efforts and Vanderburg Elementary. The Global Genes Project has made it easy for children, students, friends and families the ability to get engaged in this cause, and support this community in need. The finished bracelets that the children will make, will be distributed to families with a child battling a rare disease, to let them know other people care and support them in their fight.
This effort in Nevada has been no small feet, in fact, the Carrie Ostrea, mother of Hannah, who has been heading up this effort was able to work with volunteers from the Las Vegas Beading Society that will be helping the children with the bracelet making. There have also been numerous donations from beading companies to help ensure that this project is a big success. It takes a village. It takes passion and compassion. Las Vegas has got it all going on!