#ShowUsYourRare for GIST Awareness Day!

/#ShowUsYourRare for GIST Awareness Day!

#ShowUsYourRare for GIST Awareness Day!

By |2015-04-09T09:46:01-04:00April 7th, 2015|Events, News|

Last year’s inaugural GIST Awareness Day was a huge success, and we know with your help 2015 will be even bigger and better! This year, we’re celebrating GIST Awareness Day by creating a photo mosaic made from 10,000 photos uploaded from all over the world using the #ShowUsYourRare hashtag we’ve created for our newest awareness initiative.

What is #ShowUsYourRare?

#ShowUsYourRare is the Life Raft Group’s most recent effort to bring attention to GIST and other rare cancers through a series of activities that let people highlight the most special, unique parts of themselves. We want to redefine what the word rare means to the world and in doing so increase the quality of diagnosis and treatment afforded to those branded “rare.”

Why Rare? We often hear the phrases “the common good” and “the needs of the many” in reference to healthcare. The problem is, what if your needs fall outside of the common good. What if we can no longer see the trees for the forest?

In the world of cancer, diseases are split into two camps: rare and common, and with cuts in cancer research funding increasing each year, rare cancers suffer disproportionately.  With over 200 cancers vying for research funds and only five percent of proposals being awarded funds from the NIH (the largest contributor to cancer research in the world), rare cancers regularly fall by the wayside.

LRG staffer Kathrena Aljallad shows off what makes her special to support #ShowUsYourRare

LRG staffer Kathrena Aljallad shows off what makes her special to support #ShowUsYourRare: “My multi-ethnic family and traditions make me rare!”

So, when did rare become such a scary word? When did it become something to ignore?

We are asking the world to help us shine a spotlight on that which makes us…unique, beautiful, powerful, brave… in other words—rare.

Ways to participate in the #ShowUsYourRare campaign

Participating is easy:

  • To help spread awareness and contribute to the mosaic, you can post a status, photo or video to Twitter, Instagram, Pinterest or on the LRG Facebook page with the hashtag #ShowUsYourRare and encourage your friends to do the same. It can be anything you want that expresses what makes you or someone you care about special.
  • Not a social media user? Send the pictures to us and we’ll post them for you!

Help us celebrate GIST Awareness Day

There are so many ways to celebrate GAD! Help us bring attention to this disease by educating your friends and family and joining our call to action. You can support our efforts through participating in advocacy efforts, holding an awareness day event and of course, spreading the word through social media and participating in the #ShowUsYourRare campaign. No matter how you choose to celebrate GIST Awareness Day, you will be helping to shine a light on GISTers around the world- THANK YOU!

#ShowUsYourRareThe LRG and members of the GIST community will also hold in-person events leading up to the week of July 13, which will feature photo booths strategically placed in hospitals, LRG patient gatherings, and public areas like festivals and boardwalks inviting passers-by to create and pose with their own “______ makes me rare!” sign. On July 13, we will virtually unveil the #ShowUsYourRare mosaic, as well as pick winners from our top social media supporters for fun prizes.

If you have any questions or unique ideas to share, please contact Erin at ekristoff@liferaftgroup.org or 973.837.9092 x117.

 

Rare Disease DayRare was in the air on February 27, as LRG Marketing & Communications Director, Erin Kristoff and hundreds of rare disease advocates came together for Rare Disease Day at the National Institutes of Health.Though GIST differs from most rare diseases, due to our relatively larger patient population and the good-fortune of having several FDA-approved drug treatments, we are united in many ways: Lack of research funding and recognition by the greater health community are obstacles we all face, out of this comes a general sense of camaraderie borne from knowing that we are all in this together—and together we can succeed. At this year’s event, presentations were made on a variety of topics including community building, translational research and maintaining meaningful dialogue amongst advocates, medical professionals and policy makers. Representatives from the Rare Diseases Clinical Research Network, including the National Center for Advancing Translational Sciences and the Coalition of Patient Advocacy Groups shared innovative models for keeping the needs of rare disease patients at the forefront of research.Erin enjoyed learning from these pioneering organizations and sharing the LRG’s new awareness-building #ShowUsYourRare campaign with patients and advocates alike.

 

Are you or a loved one social media savvy? Become an LRG Social Media Ambassador and #ShowUsYourRare!

Everyone is special in some way. Maybe you have a winning smile, rare coin collection, great group of friends? Snap a pic and post to one of these social media platforms: Instagram, Twitter, Pinterest and the Life Raft Group’s Facebook page with the hashtag: #ShowUsYourRare.
It’s that easy!
Email or call Erin at ekristoff@liferaftgroup.org or 973.837.9092 x117 with questions or ideas.

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