- - - - - - - - - - - Winter 2016 - - - - - - - - - - - - -
On the surface, one might not see a very obvious connection between the quilt world and an organization whose mission it is to find cures for children with rare disease. But dig a little deeper and you’ll find the connection by means of one truly adorable fabric bear.
RARE Science is a non-profit research-based organization that “focuses on accelerating identification of more immediate therapeutic solutions for kids with rare disease, potentially through re-purposing currently approved drugs and other therapeutic approaches.”
Of the 7,000 identified rare diseases, 50% affect children. And 30% of children from this group will die before their fifth birthday, while the current drug development process takes an average of 14 years and $2 billion. In an effort to lessen this discrepancy, the RARE Science organization looks for ways to use existing approved drugs to treat children with rare diseases.
The RARE Science team—made up of scientists and executives who have worked in the pharmaceutical industry—also works to build registries that detail patient reported information, research, and clinical data in an effort to find connections between the diseases
and treatments and cures among them.
“It is not widely understood that most kids’ diseases are rare and, collectively, there are millions of kids suffering and families trying to navigate the health care system to get help,” explains RARE Science Founder and CEO, Dr. Christina Waters.“Through our rare approach, we aim to help millions of patient families and avoid each family
from having to recreate the wheel.
"Working directly with patient families/foundations to empower them with tools accelerates the process by bypassing obstacles prevalent in the rare disease community. We provide tools and work with patient families and foundations on the ground and in the trenches to accelerate identifying more immediate therapeutic solutions
for kids in their lifetime.”
Last year, Waters also initiated the RARE Bear program, a grassroots, community-driven project that gifts one-of-a-kind fabric teddy bears to children with rare disease. The bears are created entirely by volunteers, with each created from donated fabrics that are specific
to the likes and interests of a particular child. Each bear is given a serial number that is unique to the bear and the recipient.
Simplicity is offering a special RARE Bear Sewing Pattern to be used for the project, with a portion of the proceeds from the sale of the pattern going directly to RARE Science. Those interested in helping can also donate quilters’ quality fabrics for the project, help stuff bears locally (in Southern California), cut fabric, or make a donation
to help fund materials for the bears. Visitors can find information
on joining the RARE Bear Army at RareScience.org.
The program has already garnered sponsorship and support from companies and organizations like Spoonflower, Fairfield World, Simplicity Patterns, the Quilt Alliance, The Quilt Show.com with Alex Anderson and Ricky Tims, and your friends here at International Quilt Festival. Although this level of generosity wouldn’t come as much surprise to most in the quilting industry, for Waters, the response has been incredibly surprising and overwhelming.
“I am truly moved by how many people are inspired to help kids with rare disease through the program,” she says. “We have grown fast, spanning seven countries, and including 31 U.S. States. We are now over 300 people, and we only started in October of 2015.
“There are two main things that inspired my commitment to RARE Science—the emails and calls from patient families expressing how we have helped them, and the amazing groundswell of support from the RARE Bear Army. I believe we can all make a difference in our communities, but together as a community, we can change the lives of children.”
For additional information on the organization and program,
And check out additional articles and interviews at
The RARE Bear pattern from Simplicity
RARE Bear recipients (and their families) at The Quilt Show with Alex Anderson and Ricky Tims booth during fall Quilt Festival.
Science and sewing collide…