As a child, Talia had a knack for figuring out how to… figure things out. When she didn’t have the skills she needed to do something, she would at first get frustrated; but soon she would become single-minded about learning how to do the thing, keeping at it with a laser-sharp focus until she had it down. When she was first learning to play basketball, for example, she understood she needed to be able to make lay-ups. And to be a well-rounded player, she knew it wasn’t enough to be able to make right-sided lay-ins—she needed the skills to go down the left side as well—which was even trickier for a right-handed person. That she kept missing made her really, really mad! But Talia was never willing to give up—she was stubborn like that. Once she realized how to break it down into its parts—that it was all about the foot-work and the timing—she knew what to do. One evening, she went outside with a ball and did 742 left-sided lay ups. By that point, she was making them consistently! The sun had long since gone down and it was dark by the time she came inside, satisfied with the day’s accomplishments. Our girl had gumption and determination—she figured out the foundational skills she needed to get the thing done.
We are channeling Talia’s drive as we learn to fund-raise for the patient safety research study we are sponsoring in Talia’s name. I feel a little like I’m learning to do lay-ups on my non-dominant side (fund-raising is not a natural skill for us). But—chip off the old Talia block—we’re determined to get there. And, with help from many of you, we have brought in donations totaling about $125,000 dollars so far. As Jeff likes to say, that’s $125,000 more than we ever thought we could raise! Still, we’re only a quarter of the way there, and our campaign is on-going, as it will take $450,000 to fully fund this study. (And if you’re considering contributing, we welcome both large and small donations, since every dollar counts towards our goal.)
In the spring we were at the University of Washington for a joint Talia’s Voice / UW Medicine fundraising event and we were fortunate to have our dear friend and Board member, Dr. Leslie Kean, as our emcee. Leslie is a pediatric hematologist/oncologist at Harvard where she is both a clinician and head of the bone marrow transplant research lab. As both an MD and a PhD, Leslie understands how the clinical and research/academic aspects make medicine “work,” and she made this relationship relevant for the audience. Dr. Thomas Gallagher, executive director of the Collaborative for Accountability and Improvement and the lead on the research we are fundraising for, helped the audience understand the details of the research itself—what it entails, and how it will help us understand what happens to patients who are harmed by the system, and what kinds of support they need. And we gave our personal presentation about Talia—both who she was, and how she ended up brain dead and permanently comatose the day after a surgery that was meant to improve her life.
The Seattle/UW event was a new experience for us because of the make-up of the audience. There were many generous people there who we were pleased to meet and share our story with; but there were also Talia’s own friends scattered throughout the room. Usually when we speak, if we know anybody in the audience, it is our own peers and former colleagues. In Seattle, it was Talia’s peers who arrived to hear about her life and death—friends from elementary school, her high school soccer team, her college years at Carleton, all showed up. It was profound to tell them the story of what happened to their buddy and we were so moved looking around the room from the podium, making eye contact with Talia’s “peeps” at each table. They are all grown up – educators and chemists, grant writers and bat researchers! Many are married or partnered, and some are pregnant or already parents! It was rewarding, touching, and heart-breaking to share the evening with them. We know it is a testament to Talia—to her vitality and loyalty, her ability to connect deeply and have an impact wherever she went—that her friends showed up almost a decade after her death. If we could get providers to practice medicine with the same kind of love and care demonstrated that night, medical error would be reduced significantly, because the providers would be earnest in their desire to see, know, and listen to their patients.
In terms of the research study itself, the principle researchers are national patient safety leaders from UW Medicine and Stanford (Thomas Gallagher and Michelle Mello). Patients in the study will be drawn from the University of Washington and Johns Hopkins University. We are excited about our developing relationship with Johns Hopkins because because of its leadership in and dedication to patient safety, in particular through the Armstrong Institute. Their participation alongside the University of Washington elevates the research to a new level, a fact we are very proud of. Both universities are finalizing personnel and processes and we anticipate that interviews with patients will begin soon. It is very exciting to see this project actually lifting off the ground.
And of course, we soldier on with our speaking engagements at conferences, medical schools, hospitals, and in training programs, as well as with our committee work. Indeed, our fall schedule is very full with speaking engagements in Kansas City and Baltimore and a fundraiser in Vancouver, BC. On our best days, we see this as an indication that people in the medical field know we have something of value to say, and that they are listening.
May you each have some good times in the summer sunshine!
Naomi and Jeff