My name is Christina Waters and I am a medical geneticist. Through personal passion and commitment to health and wellness of children, I started a volunteer based non-profit called RARE Science which has an innovative, laser focus to accelerate finding therapies for undiagnosed and rare disease kids. The RARE Science Team does this by empowering patient families/foundations with tools through our RARE Bear Program. The RARE Bear Program which started less than a year ago has become an international community, fondly referred to as the RARE Bear Army, that supports our patient community building by providing RARE Bears for kids in our program. Also, the RARE Bear Program is the foundation of our research programs enabling patient family outreach, building of patient communities, education for clinicians and researchers, early diagnoses strategies and world-wide research/clinical support. We pool knowledge across the globe to accelerate understanding the biology that is responsible for the observable traits of rare disease. This helps to identify therapies that may help in the more immediate. All of these activities unite patient families, clinicians and researchers across the world to accelerate finding cures for the most vulnerable patients, our children!
The RARE Bear Army Changes the Lives of Children
Rare disease patient communities are small, but collectively there are about 200 Million kids that are undiagnosed or have rare diseases. It is reported that 30% of kids die before their fifth birthday, and that rare disease is responsible for 35% of deaths in the first year. We need faster ways to diagnose and treat kids worldwide. Currently, RARE Science is empowering patient families/foundations with a framework to address the needs for this new approach. We work one on one with the families/patient communities to create a customized strategy. The first steps involve patient community outreach through our international networks and our RARE Bear Program. This enables us to create registries and networks of kids of different diseases world-wide so we have enough data to start understanding the biology of the disease on the way to identifying potential therapies that could help.
The RARE Bear program is a special effort that works on multiple levels. It is supported by 700 RARE Bear makers spanning nine countries (including 46 states in the US), a rapidly growing network of amazing sponsors, and RARE Bear helpers such as the Girl Scouts, Boy Scouts, and other community service groups that stuff the “Bear Skins” when they return to headquarters from around the world. The bears are made from remnant fabrics making each bear one of a kind, just like our one of a kind kids. In addition, the bears have serial numbers so that we can send a picture back to the bear maker of the child and bear in its new home. These special RARE Bears are not only instrumental in building our patient communities, but also bring support, love and hope to rare kids and their families. It illustrates that together and united as a global community whether we sew or do science, we can change the lives of kids!
We want every undiagnosed and rare child to have a RARE Bear so they know that many people around the world in many different ways are here to help. We have about 200 Million kids to send RARE Bears to and that is why we need everyone’s help.
A Beary RARE Affair
At the International Quilt Festival in Houston, Texas this year, RARE Science with our amazing sponsors we will be hosting a “Stuff – in”, called “A Beary RARE Affair” get together. On Friday, November 4th from 6 to 8pm, 200 participants will stuff a “bear skin,” mingle with celebrity bear makers and have a chance to win a BERNINA Simply Red sewing machine! We will have other gifts as well, which include celebrity signed books and patterns, gift baskets and other exciting surprises. On display will also be our one of a kind collector Celebrity RARE Bears that will be part of a silent auction held during the Festival. Come help us help kids one Bear at a time, mingle with friends and celebrities, view Celebrity Bear collection and win one of a kind gifts in support of our one of a kind kids! Register here!