Organization: Little Miss Hannah Foundation
The Little Miss Hannah Foundation was awarded the Genzyme Patient Advocacy Leader 2012 Award for our school-involved World Rare Disease Day program! We were only one of nine organizations worldwide to receive this honor along with a grant to help us expand our program.
We are very proud to receive this award for our Little Miss Hannah’s Jeans for Genes Day school awareness program. It has been a labor of love, and it could not have been as successful as it has become without the help of Ms. Maggiore, Principal of Vanderburg Elementary School, the Vanderburg PTA, the Global Genes Project, and Cure 4 the Kids.
For the past two years, we have celebrated World Rare Disease Day by working with Vanderburg Elementary School in Henderson, Nevada, to increase childhood rare disease awareness. Special focus is given to those conditions that are life-limiting. Hannah’s disease is also explained and her life provided as an example of how children with rare disease must live each day.
Our program, designed for February 22, 2013, has confirmed the participation of three Henderson schools this year – Vanderburg, Lamping, and Barlett Elementary Schools. With this grant award from Genzyme, we will be able to increase the number of schools to 10 Nevada schools this year!
From the PAL Awards website: “Proposals were reviewed on an expanded list of criteria, so in a sense it was even more challenging this year. Patient organizations met that challenge by bringing forth their best creative ideas, strategic thinking and approaches to sustainability. “