BSCRIP Interns Giving Back through RARE Science

As part of their community service/outreach, this past Sunday, October 8, 2017, Cohort 9 of the BSCRIP Program stuffed and sewed RARE Bears for the organization RARE Science. RARE Science is a non-profit research organization working to accelerate the identification of more immediate therapeutic solutions for kids with rare disease.  Their mission is “Accelerating cures for RARE Kids.”  The approach is to empower patient families and foundations with the tools/resources they need to drive forward finding a cure.

BSCRIP Cohort 9 proudly showing off the RARE Bears they completed.

RARE Science has developed the RARE Bear program, a grassroots community-driven outreach for kids with rare diseases. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “RARE” kids.  These bears are shipped all over the world to those children who participate in RARE Science.

Jerry Guzman sees the global value of this organization. He says, “I feel RARE Science is an amazing support group helping families world wide. There is a huge need for better, more accurate diagnosis and need of therapeutics for people with rare diseases.”

When the interns learned of an opportunity to help through making RARE Bears, they embraced it enthusiastically, and became a part of the RARE Bear Army. Danny Ryback, one of our Masters students says, “It’s hard to stay apathetic when you see children wasting away because of nothing more than an unlucky role of the cosmic dice.”

Helping with RARE Science has made the interns realize the true value of the research they are conducting. Josh Sohmer, who is working very closely with the organizer for RARE Science, Christina Waters, says “Working with RARE Science lets us scientists move away from the bench and really put a face to the work we do everyday.”  Nick Elliott, another intern, says “It’s easy to separate science from people, but the RARE Bear program brings that patient connection that my laboratory can’t. There’s something about stuffing a bear and knowing that it will go to a kid in need that brings the human perspective to our work.”

They spent several hours stuffing RARE Bears and sewing them closed making them ready for the “RARE Kids” to receive.  Next they will gather with a larger group of volunteers to match each RARE Bear with one of the RARE Kids.  Andy Thomas says, “I want them to know that they are not forgotten and that through the use of the latest development in stem cells, we may be one step closer to helping them clinically.”

 

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