Global Genes Project E-News

Update: Pepsi Refresh Grant Competition

September Pepsi Refresh Competition ended with the Global Genes Fund in 12th place. Not enough to win the $250K, however, it was an effort that provided tremendous awareness for our kids affected by rare disease, and has created new champions for the cause! A success in our book, read more...

Update: September recojeans Fashion Show and Charity Auction

Fun was had by all who attended this very special fashion show and fundraiser for rare disease. New friends were made while some of the upcoming season's best designs were shown during the runway event. Special thanks to those organizations that participated; recojeans, Greenhouse, Certe NYC, Ecru New York, Magner's Cider, Sleek Medspa, and many more.

7000 Bracelets For Hope - You Are Invited to Participate!

The Global Genes Project Volunteer team is collecting blue jean/denim inspired bracelets to gift to families living with rare diseases, disorders or conditions. This first of its kind global campaign is called "7,000 Bracelets for Hope".

To help raise awareness for this community of millions, we are asking jewelry designers, volunteers from the craft community, and various artists of all kinds to donate hand made bracelets to this campaign to show their support of rare kids. Anyone can participate! This campaign will be ongoing through World Rare Disease Day on February 28th, 2011. Parents can sign up to receive a custom bracelet and designers can sign up to give a bracelet, providing a gift of 'hope' for this community in need! For more information and to find out how to participate, join us by clicking here >>

You're a Member of Global Genes... now what?
Join Our Oct. 28th Quarterly Conference Call

Join us for our first quarterly conference call to learn how you and your organization can participate, take advantage of the current resources available, share ideas and learn from one another!!!

RSVP for this call being held October 28, 10:00am pst - 1:00pm est. RSVP4Concall@globalgenesproject.org

Successes in utilizing Global Genes

Joubert Syndrome Foundation
Elizabeth Joshi was drawn to The Global Genes Project as an advocate and as parent of a child with a rare condition. Elizabeth has a 5 year old son with Joubert Syndrome, a rare genetic disorder caused by a defect in the cerebellum of her son's brain. He is unable to stand, walk, speak or eat solid foods. Although she is actively involved as a board member for the Joubert Syndrome and Related Disorders Foundation (JSRDF), she reached out to The Global Genes Project, as she saw the importance of promoting the cause of rare conditions as a whole. "Due to the relatively small number of children affected by my son's condition, I knew joining the "rare" community would be a great way to raise awareness for not only my son's condition, but the almost 7,000 that are documented at this time.", stated Joshi.

Last February, Elizabeth used materials from The Global Genes Project to raise thousands of dollars for JSRDF. "I was provided with posters, counter cards, etc. that were customized for JSRDF and with my son's photo, name and information about Joubert Syndrome on them, which I was able to download and print. I contacted local businesses, including a coffee chain, toy stores, salons, children's shops, etc. I placed the materials in these venues and sold "$1 Makes a Difference" cutouts, which customers of the businesses purchased for a $1 and signed for display in the business." Through these efforts, Elizabeth was able to raise a lot of awareness about Joubert Syndrome and rare conditions as a whole. "Some of the individuals who talked to me when they saw me at one of the businesses have become lasting friends and supporters of my son and his condition. The momentum carried over into other ways, as well. After speaking about my efforts with the law firm I used to work at, the firm decided to have their own jeans party and charge employees $5/each to wear jeans. Over $2,000.00 was raised from this alone for JSRDF. Other friends and family sold denim ribbons at school or businesses or otherwise donated money in support of the cause."

Canadian Organization for Rare Disease
The Canadian Organization for Rare Disorders launched the CORD Global Genes Research Fund to engage individuals, patient organizations, and corporations to raise funds for the Canadian Institute for Health Research first research competition for rare diseases. Also launched at the 3rd Annual CORD conference was a new dedicated website which allows all fundraisers to post their campaigns and invite individual contributors to donate online. The CORD Global Genes campaign and website, www.corddonate.ca, will raise awareness about rare diseases, their impact on individuals, and progress through research. CORD is grateful to the Children's Rare Disease Network for the use of the Global Genes logo and public relations material and for the opportunity to be part of an international community to increase awareness and support for rare diseases.

Community Show and Tell

Global Genes wants to hear from you! Does your organization have upcoming events, news, or information that you would like to share? Let us know, and we will publish it in the next monthly newsletter! Share now!

Rock Stars of Science
GQ Magazine and Geoffrey Beene Gives Back® - two leaders in the high profile world of men's fashion - reunite in 2010, in cooperation with the Entertainment Industry Foundation, for Rock Stars of Science™ (Rock S.O.S™) (www.rockstarsofscience.org) - a multimedia/print and online philanthropic campaign that salutes researchers as the, 'Rock Stars' who dedicate their careers to saving lives.

Rock Stars of Science™ excites the next generation to pursue careers in science - by pairing A-list rock stars and celebrities with the country's leading medical researchers, to bridge the recognition gap that seeks to wake up the public that scientific illiteracy threatens our future.

This year's Rock S.O.S™ Campaign will run in GQ Magazine's December 2010, 'Man of the Year' edition, online at www.rockstarsofscience.org, and via Twitter, Facebook and YouTube. It will celebrate Translational Cancer Research - the 5 Dream Teams of Stand Up To Cancer, HIV/AIDS, Neuroscience, Stem Cell Research, and Children's Rare Diseases.

Be on the lookout, GQ and Rockstars will arrive on newsstands everywhere December 1, 2010

RareArtist.org
Kakkis EveryLife Foundation, www.kakkis.org, is holding their second annual EveryLife Art Contest. The art contest was established to empower artists, ages 5 and older, affected by Rare Diseases to express their unique struggle with rare disease. Artists may have a Rare or Undiagnosed Disease or may be close friends, family members, or care takers of those with a Rare or Undiagnosed Disease. Entries must be received by 5pm PST on Friday, January 7, 2011. For more information on how to participate and to view last year's submissions go to rareartist.org.

How are you using the denim ribbon and this unifying campaign to help your cause? Share your stories with us! info@globalgenesproject.org

Don't forget to join the discussion on Facebook, Twitter, and within the 'Global Genes' blog channel.