This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via the transcript that runs below.
I’m Aware That I’m Rare: Katie Davis
The phaware® interview (Episode 96)
The Race Against PH was started in 2001 by Katie Davis, Eddie Davis and Paige Dunn to promote awareness to the devastating disease Katie’s mother was battling. The 17th Annual Race Against PH 5k takes place on Nov. 5, 2017 at 9 a.m. at Stanford’s Pac-12 Plaza. Proceeds benefit the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford and support research and efforts dedicated to finding new treatments and, ultimately, a cure for PH.
Hi, my name’s Katie Davis. My maiden name was Katie Ewing, and I am calling in from San Mateo, California.
Today I’d like to tell you a little bit about the Race Against PH that we started in 2001.
I started the race with my lifelong friend, Paige Dunn, and my current husband (fiancé at the time) Eddie Davis. We started the race after my mother had been diagnosed with pulmonary hypertension, and Paige, my friend, thought it would be a great idea for us to be able to remember my mother after she was gone, and to help raise awareness and potentially a cure one day for this terrible disease that she had been fighting.
We started it in 2001, and the first race was at Lake Merced in San Francisco. The three of us, along with a race management company that we hired, put on the entire race. We started out with my parents’ Christmas card list and sent out to friends and family that were friends of hers from all over California, and we had an incredible attendance that first year. I think we had about 150 people. I think I knew pretty much everyone there that first year, which was great, and it was a great way to support my mother and also to just raise awareness with her friends and with others about this terrible disease.
The first year she wasn’t there. She had just gotten out of the hospital at Stanford and she was given … after the race, we had all the folks that attended sign a guest book, and so we gave her that guest book the first year, which was really a neat thing for her to be able to see all those folks that came out.
After that first year, we were approached by Stanford University, which is where my mother’s doctors were and where she had been seen for the last three years. They came to us and asked if we would like them to help with the race and actually take the race on, including everything from an organizational standpoint and supporting it and promoting it. With all three of us working full time at the time, we said, “absolutely!”
Stanford has run this race since that time. November 5th, will be the 17th year that we’ve put this race on, and (we’re) really excited to have Stanford involved, and we obviously couldn’t have done it without them. It’s been a great way to continue what we started back in 2001 as just a little race around Lake Merced, and it’s now held on the beautiful Stanford campus.
Patients attend special event
Typically, we get around 2,000 runners and walkers each year, and what’s incredible is that there are a lot of patients there each year. Some of them are doing it with oxygen. They’re surrounded by their friends and family. Some are in wheelchairs, and it really is amazing to see what it has grown into. It’s a special day for me. It’s a special day for my dad and my husband and Paige. It’s something to be proud of and something that we feel so lucky that we have the support of the Vera Moulton Wall Center at Stanford.
Initially, my mother was not that keen on us doing the race because she didn’t want to draw attention to herself and she didn’t want to make her illness into something bigger. My friend, Paige, sat down with her and expressed how much her friends wanted to support her and how important it is for diseases that often people don’t know a lot about, how important it is to raise awareness. Every year we think about this little race that the three of us tried to pull together, and what it’s become right now, and that we are raising funds to hopefully one day find a cure.
We’re proud of the work that Stanford has done in the area and I now know other patients, friends actually, that have been diagnosed with the disease, and it was something that I had never heard about prior, and now I feel like I’m hearing more and more people being diagnosed with it, and obviously anything that we can do to raise awareness and money for research, and eventually a cure, is obviously a great thing and a great feeling to know that there’s some little small thing that we can do to help along the way.
Stanford and the Wall Center have allowed me to usually kick off the race or help announce the awards at the end of the race, which is just really a nice way to get in front of the crowd, kind of share in the event with them, so that’s really nice.
As a daughter of a patient battling pulmonary hypertension, especially when the disease was not as well-known as it is now, there were obviously a lot of ups and downs over the years. A lot of trips to Stanford Hospital. My parents were living across the Bay in Orinda, and my mom spent a lot of time in the hospital. I was fortunate enough to live very close to Stanford and be able to spend a lot of time with my mom while she was there.
The thing that really sticks out to me is the quality of care she received at Stanford. Her doctor, Dr. Ramona Doyle, who’s no longer at the hospital, but still does participate in the race as many years as she can or has over the last 17. She was such a wonderful doctor for my mother and supporter for my father. She attended my mom’s funeral and became just someone that really helped us along the way. I still, every time I see her, I feel so fortunate, and I know my dad and sister do, as well, that my mom had such an incredible doctor who had a wonderful bedside manner, and also went to great lengths to give her just such a good quality of care.
I think I can say that about all the nurses and doctors at Stanford, along with the Wall Center and Kristy who puts on the race every year, and Dr. Feinstein and Roham Zamanian. We really were lucky to be close to Stanford and to have that support system. They obviously played a very big role in continuing this race, and they played a very big role in her care.
Obviously, a day doesn’t go by that I don’t think about her, but the first Sunday in November will always be and we always do the race on the first Sunday in November, and so that will always be just a great day for me to spend additional time thinking about her and what she meant to me and what she meant to others. I really look forward to the day, and every year when I send a note out to all the folks that have participated or donated or I’ve heard from, that Sunday night, I always think about her.
In my eyes, it’s a great day for me and I know that it is for my husband, as well. As well for my sister who lives in London and isn’t always able to attend. And then my father, as well. It’s a great day. Hands down. It’s just really a nice way to remember her, while also doing something for the broader PH community.
My name’s Katie Davis and I’m Aware That I’m Rare.
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