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WSCS 2022 Advocacy Award presented to Parent’s Guide to Cord Blood Foundation
The World Stem Cell Summit, in partnership with the Regenerative Medicine Foundation, has presented their 2022 Advocacy Award to Dr. Frances Verter & the Parent’s Guide to Cord Blood Foundation. This presentation occurs during minutes 26:24 to 41:16 of the embedded video. The presentation starts with an introduction from WSCS founder Bernie Siegel, followed by three parents describing how the Foundation helped them, and finishes with a seven-minute acceptance speech from Frances Verter. Some excerpts below.
“I am obligated to say a little bit about Parent’s Guide to Cord Blood Foundation: who we are, what we do, and why we are getting this award. But I have been warned to keep it short.
The Parent’s Guide to Cord Blood started out as a website that I launched in 1998 in memory of my daughter Shai, who had died of cancer the previous year. My goal was to help educate parents that umbilical cord blood was not medical waste, that it held stem cells, and those stem cells could be used instead of bone marrow in stem cell transplants for cancer patients. The purpose of the website was to educate parents about their options: they could either donate the cord blood to a public bank for unrelated patients, or they could bank it privately for their family. Over the years, this website became so popular that I ended up incorporating it as a non-profit Foundation and I left my day job at NASA to work full time running the Foundation.
There is a certain irony in Parent’s Guide to Cord Blood Foundation receiving an award for 'Advocacy', because over the 24 years that I have been running this organization, the nature of our advocacy work has evolved.
In the beginning, what we provided was Consumer Advocacy, to help parents navigate between the sales pitches of different family cord blood banks. There was virtually no patient advocacy, because the only medical therapy with cord blood was transplants for childhood cancer, which is a rare disease.
Over the years, more and more clinical trials around the world have used cord blood cells to treat neurologic conditions like cerebral palsy and autism. In some countries there are regulated pathways where parents can apply to get this therapy for their children, and in many countries there are unregulated clinics offering unofficial treatments. The result is that today, in 2022, the vast majority of inquiries that we receive at the Parent’s Guide to Cord Blood are on the topic of cord blood therapy, not cord blood banking. Thus, we have witnessed a nearly complete conversion of parent inquiries from Consumer Advocacy to Patient Advocacy.
We thank the Regenerative Medicine Foundation and the World Stem Cell Summit for recognizing that, even though cell therapy with cord blood has evolved over the past quarter of a century, the need of parents for balanced and accurate information is a constant, and the Parent’s Guide to Cord Blood Foundation has been here to fill that need. We also thank all of our donors, both large and small, from around the world, for supporting our efforts to maintain this resource for parents.”