Pepsi Refresh Grant Competition inspires rare disease groups to compete for much needed funds!
Over the past few months we have had the good fortune of supporting a variety of rare disease initiatives that were all vying for Pepsi Refresh Grant monies.  The winners are chosen based on votes, and our rare disease community has done an amazing job being supportive of one another!
We in fact have made a concerted effort each month to promote those initiatives on rare disease tickets to ensure that every Pepsi Refresh competitor gets the attention it deserves.  It has been fun and inspiring to see the community work together!!
Now it is our turn -VOTE4HOPE.org!
Over the past two days – Vote4Hope  launched as a voting campaign centered around the Global Genes/CRDN submission for a Pepsi Refresh $250K Grant.   Global Genes/CRDN is developing The Global Genes Fund in conjunction with over 25 rare disease advocacy groups and parent advocates.  The Global Genes Fund is a technology platform that will exist to 1. Promote innovative ‘in their lifetime’ research and therapy development for kids affected by rare disease, to the general public 2. Create greater awareness about the prevalence of rare disease and the needs of the community at large.
This platform is being funded and developed by various underwriters including CRDN, the $250K grant win would help fast-forward the development of this new Fund, and ultimately be a win for the rare disease community as a whole.   Qualifying research will be included in this platform at no charge to the organization, providing an opportunity for rare disease organizations to garner new money and create new champions.   The Global Genes Fund is being developed ‘by the rare disease community  for the rare disease community’, this means we need the same energy and momentum behind it as the other disease specific rare disease initiatives.
Watch this video spot
https://RAREproject.org/stories/videos/vote4hope_lg.html     Various videos have been crafted showing some of our kids taking ownership of this campaign as ‘their project’.  We are encouraging all patient and advocacy groups to do the same.  Join the campaign, get out the vote and make a huge difference in just 30 days – imagine. . .
Contact Nicole Boice with any additional questions regarding the Global Genes Fund at nicoleb@rareproject.org

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