The Important Role of Patients

  • 13 May, 2019

A wide variety of motivations propel us to pursue science careers at the bench or in industry. Often as young adults we’re driven by curiosity and the desire to understand why things work the way they do. Once captivated by science, we’re fascinated by what we still don’t know and encouraged to learn more, to figure out and reason through the challenges, on the way to eventually discovering a breakthrough that advances the field or brings new understanding.

One key motivator for many of us is the potential to have a real impact on the lives of patients and their families. I’ve often spoken about my own focus on patients—in particular my own children, who were both diagnosed with Type 1 diabetes years ago. And many colleagues similarly find themselves motivated to pursue new treatments and cures that could help their loved ones as well as others suffering from disease.

Learning from Patients
Patients play an important role in reminding us of the relevance of our work to human health. We have an entire audience, if you will, of patients who are waiting for new scientific contributions to medicine that can address their diseases and disorders, many of which have no cure. Regenerative medicine may offer the best hope for treatment for millions of people.

For that reason, we feature one or more patients or patient advocates at each of our annual meetings, and we hear their perspectives and insights. It’s always an inspiring moment in the program, and the room goes quiet as the speaker brings home the reality that stem cell science has the potential to transform human health.

This year we will be hearing from friends of Nanci Ryder, a publicist based in Los Angeles who was diagnosed with ALS in 2014. She’s no longer able to speak but her many friends, colleagues, clients, and supporters are raising hundreds of thousands of dollars for research to find a cure. It is a testament to the strength of patients and their supporters in advocating for research that can make a difference in their lives. 

A public symposium before the meeting will focus on “Bringing Stem Cells to Patients: Treating Age-related Blindness.” Top scientists will talk to the public about the most current research on stem cell-based approaches to treating age-related blindness. The event, sponsored by our meeting partner, USC Stem Cell, will be held on the lawn of the Broad Center near the USC campus.

In California, Americans for Cures advocates for stem cell research and therapy, with the goal of improving the lives of patients and their families. They empower patients to speak out about the impact stem cell research has had on their lives and to advocate for continued funding through the California Institute of Regenerative Medicine (CIRM). In their “Report Back to the Public,” patients engage with voters throughout the state about the many successes in stem cell research since Proposition 71 funded CIRM in 2004.

Last year in Melbourne, we heard from Daniel Feller, father of 7-year old Harry, who founded Genetic Cures Australia after his son was diagnosed with Usher Syndrome Type 1F. Daniel inspired us with stories of the humor and tenacity with which Harry faces his life and deals with the challenges of his disease. The Feller family has great strength and courage, and optimism that science and continued research will eventually lead to a cure for the disease.    

I know there are many of us who are inspired by patients, family members, friends, and the pursuit of science that shows so much promise for cures. Through the voices of patients, we all learn about the importance of our work; I hope you will join me for the patient-focused talks at the 2019 annual meeting in Los Angeles.

Douglas Melton
ISSCR President, 2018-2019