This summer, students in California Institute for Regenerative Medicine’s Bridges to Stem Cell Research and Therapy program at California State University (CSU) San Marcos had new lab partners: families impacted by rare diseases.
CIRM’s Bridges program is designed to prepare promising California undergraduate and graduate students for exceptional careers in stem cell research through hands-on training and education, as well as outreach activities which helped provide a picture of how their research lives on beyond the lab.
Christina Waters -- founded of Rare Science, a non-profit group focused on rare diseases in children – saw an opportunity to “change the conversation and have researchers and families communicate, making families equal stakeholders in the research.” Her heart set on “science with love,” Waters partnered with CSU San Marcos to pair Bridges students with five patient families with different rare diseases.
So far, the program has been a success, with families and researchers alike finding new import in their roles and new allies along the way. Aaron Harding, whose son has a genetic disorder that can cause seizures, mental retardation, speech problems and autistic-like behavior, said of the program and the student researchers, Emily and Uju:
“Personalizing diseases by connecting scientists with those they seek to impact is so important. Emily and Uju took this opportunity and ran with it, and that says a lot about them… taking on and exploring the unknown. That attitude is the heart of a scientist.”
Why It Matters
Empathy matters in nearly every aspect of healthcare. It’s been proven to have tremendous impact with doctors, nurses and medical students. Researchers are no exception.
As one of the students said, “People who work in labs everyday are most often working out the minutiae of research. They don’t often get a chance to see how their research can change or save the lives of real people. Meeting patients is so motivating because afterwards you aren’t just studying a mechanism, you now have a friend with the disease, so you can’t help but be personally invested in the search for a treatment.”
We know from our own research with advocacy groups – including interviews with Christina Waters – that patients and their families long to be included earlier on in the clinical development process so that all parties can work to get much-needed treatments into the hands of patients.