Advocating for change
Monday, June 22, 2009
In the middle of the night, Mary Schneider sat straight up in bed.
The Batavia mother of two realized her 2½-year-old son’s umbilical cord blood, donated to a blood bank, might treat his cerebral palsy.
Her son Ryan had just been diagnosed, Schneider says. But symptoms began to show themselves more than a year earlier. Ryan’s tightly bound hands prevented her from washing his palms. And while his loose tongue kept him from talking, it made him choke on a regular basis, threatening his life.
That was in 2005 and Schneider spent weeks faxing medical records to some of the country’s top doctors while leaving messages with anyone who would listen to her theory. She learned later that doctors already had been experimenting to prove this premise.
Dr. Joanne Kurtzberg at Duke University Medical Center in Durham, N.C., finally agreed to transplant some of Ryan’s own stem cells into him. His symptoms began to lessen within weeks.
Then-Sen. Barack Obama, in a 2006 stem cell statement in the Congressional Record, says Ryan’s stem cells "seem to have cured him."
Schneider now works as a cord blood advisory board member for HealthConnect One, a medical training and technical assistance nonprofit based in Chicago. She also serves as a legislative advocate and adviser for the Children’s Neurobiological Solutions Foundation in Santa Barbara, Calif.
She hopes her work will help other parents find cures through cord blood stem cells.
"I knew if I had that much trouble going to the best of the best in the country, what about the other kids?" Schneider says about her mission to preserve, research and use cord blood stem cells:
Q: Your latest effort is www.cpcordblood.com. What are your hopes for this site?
A: A lot of parents find out about cord blood on the Internet by just Googling and having something I’ve put online bounce back. But the information needs to be more cohesive. So I took the contact information I had from acting as a consultant for parents going to Duke University Medical Center and asked them questions about their experiences. How did you feel about doing the transplant? How is your child doing now? I pooled their answers to give some cohesiveness to the information out there. It will help people looking at this option to understand it and hear from other parents, not just me. Parents need to know not just the medical aspects but the emotional ones as well.
Q: Studies show that those people who are familiar with cord blood banking have only heard of private banking, not public. What’s limiting awareness of public donation?
A: Everything comes down to the money. People can only go so far as the money they have. We need to make sure banks have all the printed materials they need. If these organizations only have a couple of people who are working on it, and you don’t get phone calls saying, "Hey we are out of brochures," you have no good way to stay on top of everything. Doctors can talk all they want, but if the printed materials aren’t there for parents to take home, the information is going to go in one ear and out the other.
Q: What do these banks need to do to make better use of the dollars they have?
A: Public banks need to air public service announcements in a variety of venues, and they need to air them at the right time. Do it during Oprah, not during a football game. We need to make sure that marketing is in place to use federal dollars for public service announcements.
Q: The House currently has two bills, 872 and 873, proposing the Stem Cell Research Improvement Act of 2009 and the Stem Cell Research Enhancement Act of 2009. What do these entail?
A: These hope to amend the Public Health Service Act to provide funds for human embryonic stem cell research and break down the firewalls between public and private research facilities. We want to combine the two so there won’t have to be two separate freezers, two separate sets of Petri dishes, two separate microscopes, two separate lab coats, two separate sets of pens. It’s such a waste. I’m really looking forward to the day when we can combine everything and start focusing on finding some cures.