One of my donations to 7,000 Bracelets of Hope
Are you familiar with the 7,000 Bracelets for Hope campaign? Many of us bead makers and jewelry designers are. It's a bracelet program for people or families who suffer rare genetic diseases. Here's a bit of information directly from their donation page:
"Cause bracelets have been available for breast cancer and heart disease but there has never been a unifying symbol, color or bracelet that represents the rare and genetic disease community. That’s why we started the 7,000 Bracelets for Hope™ campaign.
Since launching the campaign in 2010, Global Genes has received thousands of unique blue themed bracelet designs made from everything from cut strips of recycled denim to vintage blue glass to turquoise stones. The creativity from our volunteers is truly inspiring!
The number 7,000 represents the 7,000 different rare diseases that impact 1 in 10 people, 30 million Americans and 350 million globally. Each individual blue bracelet design we receive represents the uniqueness of one of the 7,000 rare diseases and many of our volunteers send in multiple copies of a single design.
Our goal is to continue to collect unique bracelets made by jewelry designers, artists, crafters, church groups, girl scout troops and other volunteers and distribute them to our families fighting rare and genetic diseases. Adults receive handcrafted bracelets made by our jewelry designers while children receive love friendship bracelets filled with hope."
I was just contacted by Lisa James (Manager of Community Development for Global Genes/Rare) and asked if I would host a blog hop, as they are in need of at least 40 bracelets right now! I said YES! While I'd love to get more than 40 participants, or 40 bracelets, let's just do our best to get close to that number!
Here are the details:
1. Sign up here on this blog post, until October 31. Why that date? I don't know...it's just a random date. I'd like to be able to eventually publish a list of participants but I'll take participants for the whole entire time!
2. Go to their donation page so you can sign up, and get the address to send the bracelets too, and instructions! The bracelet should be blue, and the clasp should be somewhat adjustable as you don't know the wrist size of the person receiving your bracelet.
3. Make a blue bracelet, and on November 25th we'll have a blog hop and reveal the braclets we made! Oh, and you CAN make more than one! My friend Patti Vanderbloemen recently donated 75 bracelets to the annual Global Genes Gala in LA! Talk about dedication!
So simple! If you have any questions please ask me. If I can't direct you to the answer, I will direct you to Lisa James.
Comments
The program has asked me to come forward as someone with a rare genetic disease to share about what it is like trying to get a diagnosis and medical care for an "orphan disease" -- a classification of most rare genetic diseases -- "Orphan" because no pharmaceutical company will "pick up" and then put money into research because rare diseases are rare, and thus not profitable.
I have Crohns and Vernuil's -- Crohns is bad and genetic also, yes, but it is the Vernuil's Disease, considered a secondary disease (meaning related somehow)to Crohns, that is the horrible, embarrassing, extremely morbid, painful, and disabling disease. Sadly, two of my three children have Vernuil's too.
Global Genes project asked that I speak out in order to bring dignity -- instead of shame -- to the others who suffer with Vernuil's. I was very afraid too be a part of the program at first -- getting a bracelet meant committing myself to letting go of the shame and sharing. Although I often educate medical students, going public in my community online is far more exposing. My daughters encouraged me to receive a bracelet and give the required work of speaking out that those with bracelets are asked to do by the program. Sadly, my eldest, with the furthest stage of Vernuil's -- stage4 -- passed away this summer before seeing the bracelet. And since those with rare diseases like Vernuil's often lose their lives yet the disease goes undocumented as cause of death -- another problem of "rare disease" -- I'm speaking out for her too.
I can not begin to express my appreciation to you for organizing this blog hop! I'm in! I'd love to *make* a bracelet.
Gracias,
Rita
http://mirandack.com
Thank you so much for sharing and putting yourself out there. My sympathies go to you on the loss of your daughter and so much heartache with rare disease in your family.
It's so wonderful that you will be able to participate in the hop and in creating a beautiful bracelet to share.
Although I am on a strict "NO bloghop-challenges-swap diet", I HAVE to get involved in this one!
Thanks for hosting a hop for such an important cause.
Blue is the color I gravitate toward when making prototypes - I have lots of blue bracelets!! Yay!!
Katherine
Is it too late, today? I had done this in the past and would love to join this year too. Blue Bracelet I'll do.
Please drop me a comment in my blog. Thank you, Sue. Thank you for doing this. Dita.
http://www.alankarshilpa.blogspot.com