The other day I was contacted by a mother of a child with a rare genetic disorder. She wanted to know if I would donate a bracelet to the Global Genes Project for their 7000 bracelets of hope. This is a fantastic project that is helping to raise awareness for rare diseases and disorders seen in children.
Here is some more information about the project from the Global Genes Project website.
Rare Disease affects over 250 million people worldwide, and the largest percentage are children. There are over 7,000 rare diseases that have been identified all with very unique needs, but many with little to no support. In order to really help this community they need to be viewed as one, one community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one.
Our Mission and Promise — “The Global Genes Project™ exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project™ campaign will broadly promote the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope ~ the blue denim ribbon.”
Most of us do not know the struggles and hardships that families with children with rare diseases/disorders go through on a daily basis, but everyone can help. My day job is working in research at the university. We study osteosarcoma, which is an aggressive cancer found mainly in children. Osteosarcoma is the most common bone cancer seen in children, but you don’t hear about it that often because it’s not the most prevalent childhood cancer. Therefore research dollars are harder to come by. It makes me think of the labs that are researching conditions that are even more rare and are having even more trouble finding research money.
This wonderful project is trying to raise awareness and educate people by representing rare diseases as one. I am very happy that I was contacted to help support this cause. Now it is time for all of you to help. They are looking for designers and crafters to help donate bracelets.
As their website says “anyone can make a bracelet.” Please stop by their website today to learn more about how you can help millions of children just by donate one simple bracelet.
I’m donating, will you?