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Little Miss Hannah Foundation

Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

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August 3, 2012 by Carrie Ostrea

Preparing for World Rare Disease Day 2013

student-05On February 22nd, the Little Miss Hannah Foundation will be working with students in the Henderson area on our THIRD World Rare Disease Day awareness campaign – Jeans for Genes day!

For the past two years, Vanderburg Elementary has led the way by hosting this wonderful event with their students and staff.   This year, nearby Lamping Elementary and Bartlett Elementary schools are going to be joining in this important campaign.

Last year….

On February 24, 2012, Vanderburg Elementary School celebrated World Rare Disease Day by participating in Jeans for Genes day.   The kids and staff were encouraged to forgo school uniforms and wear jeans that day, and it was amazing to see such a beautiful sea of denim throughout the school!

Over 800 students created jeans ribbons and personalized cards of hope to be shared with families with children fighting rare diseases.    In addition, the higher grade classrooms were asked to write their reflections of why it is important for rare disease awareness as well as their understanding of the role our genes and DNA play in rare disease.

The cards that were shared were so touching, sweet, and most of all, they came from hearts of these children.   These cards are going to be shared with our childhood rare disease families here in Vegas through Cure 4 the Kids as well as be sent nationwide to other families through the Global Genes Project.

Thank you to Ms. Maggiore, the principal at Vanderburg, for making this an annual event!  The amount of time and resources she has allowed us for this day is incredible, and it shows that she truly believes in the need of rare disease awareness in our community.   We can’t wait for next year – our THIRD year!

If you are in a school district within the state of Nevada and would like to have this event at your school, please contact us for more information.

Be sure to check out our pictures from our most recent Jeans for Genes Day event!

Filed Under: Blog, LMHF News Tagged With: World Rare Disease Day

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