Role
Executive Director / Founder Transplant Families
WHAT MADE YOU JOIN ACTION?
I was thrilled to hear ACTION was forming from a NPC-QIC parent lead and was long hoping for something like this to be available for the pediatric heart failure / transplant space. Any organization that highlights patient and family involvement in the quality improvement process is sure to make substantial positive change in patient care.
WHAT IS YOUR FAVORITE ACTION MEMORY?
My first in person meeting was at Lucille Packard. Getting to meet the entire team for the first time was really great. But what most struck me was how the parent advocates were treated as colleagues and not as an afterthought. The level of mutual respect in the room was something I had never seen before in advocacy with all stakeholders present. In planning sessions, the atmosphere was almost electric in project planning. You could just tell this effort was going to grow and have unprecedented results.
WHAT PROJECT ARE YOU MOST EXCITED ABOUT MOVING FORWARD IN ACTION?
I have three favorite efforts at the moment. They are FACT: Families in ACTION, PRO’s, and Education. All of these have shown iterative improvements as time goes on. There is something magical about a project that embraces when they don’t succeed and uses that to make itself better. To see patient and family input have a direct correlation to the end result, and in turn to see high praise for that end product is truly amazing.
WHY IS ACTION IMPORTANT TO YOU?
ACTION is important because it is setting the bar high for quality improvement within the pediatric heart failure and transplant space. This is quality improvement at its best. Especially since pediatric medically complex groups in general are often marginalized because there are small groups that are distributed widely. When we are together though, we are stronger. And we can create more powerful data analytics, that drives direct patient care improvement, and creates a better overall narrative to show why pediatric heart failure and transplant space is so important. This dispels the myth that we are small and therefore insignificant. This community’s work matters. It matters in helping many families to avoid transplant altogether. It matters in making those who go to transplant have a more successful journey. It matters in giving those in heart failure a bridge to success that wasn’t available before. And most of all it matters in direct results of success that our group can point to in order to keep our kids and our collective future work a priority.
WHERE IS YOUR FAVORITE TRAVEL DESTINATION AND WHY?
This shouldn’t be a complicated answer, but it is. For me, I would be happy on a warm beach just about anywhere. But for my family, nothing beats the pure joy on my kids’ faces from a Disneyland/World vacation. Even though me and my husband are driven to exhaustion from rope drop to closing the park, I wouldn’t trade away all the goofy poses my kids insist on making after about a dozen group pictures on Splash Mountain for anything. Try not to judge me, but we are definitely THAT family.
WHAT’S THE BEST PIECE OF ADVICE YOU’VE RECEIVED?
Life’s most pinnacle moments are often found in those scary moments where you don’t know whether to run or stand your ground. When you take that leap of faith, is when everything changes, often for the better.
WHAT IS YOUR FAVORITE BOOK, AND WHY?
Goodness, so many choices! Love anything from Eckart Tolle. It is both empowering and humbling to know that there is so much more to life than my own personal sphere of consciousness. We have direct impact on every person that we meet, and we can make each of those moments a positive and meaningful connection.
WHO IS SOMEONE IN YOUR LIFE WHO INSPIRES YOU?
My grandmother was a huge source of inspiration to me. She helped raise me. She taught me that I was stronger than my current circumstances, that I always had choices and opportunities to make my life better, and how important kindness and empathy are. She always had a great big hug for everyone she greeted. She started a successful real estate business after her own kids were grown to help pay for her son’s medical school. She took me in as a crazy teenager even though she was retired and living her best life. And to this day I miss her greatly. She taught me anything is possible.
WHAT’S ONE THING OTHER ACTION MEMBERS WOULDN’T KNOW ABOUT YOU?
I really love art museums. If we are all ever back in person with meetings and there is time to go on an impromptu visit in town, that is where you can find me. Soaking in beautiful art and getting my steps.
