Global Genes Project Looking F or Bead Donations

9:00 AM

I was recently contacted by a really neat organization called the Global Genes Project by Elizabeth Joshi. Elizabeth's son has a rare genetic disorder called Joubert Syndrome, characterized by a defect to the brain's cerebellum. As a result of his condition, he is visually impaired and cannot stand, walk, speak or eat solid foods. She has been a part of The Global Genes Project for over a year. I suggested that Elizabeth share a few words about the project on the blog. She was kind enough to send me this information:

There are approximately 7,000 rare diseases and disorders, with more than 20 million kids in the U.S. alone living with rare diseases, disorders and conditions. Most have no effective medical treatment and many have no foundation or group to turn to for support.  The Global Genes Project volunteer team is collecting blue jean inspired bracelets (in color and/or material) to give to families living with rare conditions. It’s part of a campaign called 7,000 Bracelets for Hope. To help raise awareness we’re asking jewelry designers to donate one bracelet each to show support for rare kids.  Starting at the end of February, around World Rare Disease Day, each bracelet will then be donated to parents/caregivers of rare kids.

Please sign up to donate on and mail the bracelets to the address listed in the registration section for the Children's Rare Disease Network. Please email a photo of any bracelets being donated and your reasons for donating to Amy Grover atamyg [@] so they can be shared with The Global Genes Project community!

We, Soft Flex Company, donated wire to this project. Do you possibly have beads or supplies that you could donate too?

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