For Katherine “Katie” Mears, advocacy started at a young age with her father and bleeding disorders communities in Oklahoma. Katie lives with hemophilia A and has used her voice for the past 26 years as a counselor at a camp for kids living with bleeding disorders to cultivate the next generation of advocates. She is also a patient ambassador for Genentech.
Transcript
My name is Katie Mears, and I’m from Tulsa, Oklahoma. I’m a Genentech patient ambassador, and I have severe hemophilia A.
This is the first one that I have been to since I was 17, when my dad was the president of our local chapter in Oklahoma. I’m so excited to come. I’m very involved in my community in Oklahoma, and we just had our annual meeting.
It’s amazing to see this on a huge scale because we just had it on a really small scale, but all of the different sessions that they can bring in because it’s national, it’s just so cool. I’m having a great time and learning a lot.
I have counseled at our camp for kids with bleeding disorders for about 26 years. So I literally, in a very small way, shepherd these kids into kind of adulthood, again, in a small way. But still, I like to think I make a little bit of a difference.
It’s really fun to watch the kids come to camp as 7 year olds and then grow up. Many of them have become counselors, have become board members, have, you know, X, Y, and Z. They become super involved in the community, some on a national level, but most just within our state. They are the future. We need them to grow up, be strong, get the right treatments, and learn all the things they can learn so that they can someday help run all of this and keep this going.
So, I just started doing the patient ambassador program in February. It’s been pretty cool. I’ve gotten to go speak at a women’s retreat in Upstate New York, and that was really neat. I got to tell my story.
Since I’m so used to my chapter, it was so neat to see another chapter and all the women there and how close they were. That’s been really special. I hope to get to do it more, to go to the chapters, see how the local chapters are run, see the women there, and really get to talk to them and hear their stories. I’ve been having fun learning about everyone else, really.
We are all here together to help each other and lean on each other, and you don’t have to go through this on your own, so, that’s what’s great about community.