February 28, 2011, is Rare Disease Day, but at the Global Genes Project, it's rare disease awareness day every day of the year. Leading up to Rare Disease Day 2011, the Global Genes Project will be calling attention to the lack of drug treatments available for millions of people suffering from chronic, life-threatening and fatal rare diseases through its 7,000 Bracelets for Hope™ and Wear That You Care™ awareness campaigns.
The 7000 Bracelets for Hope™ campaign is designed around the color blue and a denim jeans theme, which has become the unifying symbol of hope for all those who have been touched by rare diseases. Since October 2010, numerous companies, jewelry designers, artists, crafters, church groups and other volunteers have been working tirelessly to produce unique blue bracelets to be distributed to children suffering from rare diseases and their parents leading up to Rare Disease Day 2011.
"We are grateful to all of our 7,000 Bracelets for Hope™ participants who have donated materials and bracelets and who are joining the global movement to advance the fight against rare diseases and disorders,” said Nicole Boice, Founder, Global Genes Project. “The blue bracelet designs we have received for children and parents are remarkable and each one represents the uniqueness of one of the 7,000 rare diseases.”
“The Global Genes Project shines a light where one is sorely needed, providing children with rare diseases and their families badly needed connections, support, awareness and hope for the future," said Amanda Royce-Hale, Royzle Designs. “I am honored to contribute to this worthwhile cause and work to help the entire rare disease community.”
Drug Crisis: 95% of Rare Diseases Have No FDA Approved Treatments
According to statistics from the National Institutes of Health (NIH), there are approximately 7,000 different rare diseases that together affect over 25 million Americans and an estimated 250 million people globally.
It is also estimated that 80% of rare diseases are caused by genetic defects, and according to the Kakkis EveryLife Foundation, 95% of rare diseases do not have any FDA approved drug treatments. Since the Orphan Drug Act was enacted 28 years ago in January 1983, only 352 new drugs have been approved by the FDA for all rare diseases combined despite incentives by the federal government.
7,000 Bracelets for Hope™ Participants
Some of the participating companies, organizations and individual jewelry designers contributing to the 7,000 Bracelets for Hope™ awareness campaign include: Adorned, Allen Girl Designs, Alyson Garvey Jewelry Designs, Amber Woodward, Amy Giesen, Anne Manninen, BBBDesigns, BeadsKnitsAndBits, Bee's Baubles, Believe In Abilities, Brea McClain, BuzzyBizzyBeads, Carol Hudgions, Cheers To July, Chevin Terrado Designs, LLC., Crafty Jewelry, demoiselle 16, Delta Xi Chapter of Phi Sigma Sigma sorority at Binghamton University, Designs by Stevie J, EC Jewelry Design, Etsy, Fat Dog Beads, Gabrielle's Gift Inc., Gamut, Glassbaker Inc, GottaSpoilem Gems, GypsyChique, HandHeadHeart, Happy Mango Beads, Irene Celori, Jamie Barlow, Janet's Gems, Jewelry by Jennifer Pride, Jewelry by Sosalyn, Jewelry Creations by Lizardpoint, Jewelry Link Gemstones, Kaplow, KAT Creations, KatieDot Designs, Kim Wilson, Kimmykin's Boutique, KraftD, Kreations by Karlee, Lacey Ryan, Inc., Lana Chayka Designs, Lynn Warner, Made by Susan, Mami's Gem Studio, Melissa Mansfield, Memory Maker Bracelet, Murphy Originals, LLC., My Leilani Designs, Native Spirit Jewelry, Original Designs for You, Patty Haas, Peace of Mind Handcrafted Jewelry, Peace Unique, Perfect Accents by Lori, Petals N' Things, PG's Gemspiration, Pickled Beads Jewelry, The Purple Lady, Rhea's Renderings, Royzle Designes, Rozeza's Creations, Sedgeworks, Serenity's Jewelry and Gems, Spider Baby Danger Kitten, Sylvia May Forrest, Three Fates Design, Timex, Treasure4Ever, Wendy Liu, WhatKnotShop and Wild Shimmer Designs.
“We donated our beads with the utmost love and admiration to the children and families affected by truly devastating rare diseases,” said Justin Bentley, Glassbaker, Inc. “We sincerely hope that our beads and the unique bracelets created from them will bring all those afflicted with rare diseases that extra bit of hope and courage they need to continue fighting.”
“Our efforts to raise awareness through the 7,000 Bracelets for Hope™ are just beginning and we will continue building this awareness program throughout 2011,” said Elizabeth Joshi, a Global Genes Project volunteer whose son suffers from Joubert Syndrome, a rare genetic disorder characterized by a defect to the brain's cerebellum. “Although rare conditions individually may each affect a relatively small percentage of people, collectively they represent millions of individuals. We are 7,000 different rare diseases but we are all fighting for each other.”
Joining the Rare Disease Movement
The Global Genes Project website provides detailed information related to submitting and receiving 7,000 Bracelets for Hope™ designs. Individuals and companies interested in participating by donating bracelets to the bracelet awareness campaign can sign up on the Global Genes Project website at www.globalgenesproject.org. Families battling rare diseases can also sign-up to become recipients of blue denim inspired bracelets made by companies and volunteers.
