I’m Aware That I’m Rare: Kristina Kudelko, MD (438)
the phaware® interview
Kristina Kudelko, MD, is the Director of Education and Stanford’s Vera Moulton Wall Center. She discusses the 23rd annual #RaceAgainstPH, how it raises awareness and funds for this devastating rare disease and the importance of PH Courage Award winners.
Don’t miss the 23rd Annual Race Against PH at November 5 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford
My name is Kristina Kudelko and I’m a clinical professor of medicine at Stanford University. I specialize in pulmonary hypertension and therefore I have a very strong relationship with the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford.
I’ve been here since 2008 when I started my fellowship in pulmonary vascular disease, and I stayed on as faculty until now. I’ve been able to work with pulmonary hypertension patients and the Wall Center for all of those years. I am also the director of education at the Vera Moulton Wall Center and a member of the Steering Committee. And I really love my job!
Today, I am here to talk about the Race Against PH, which is a race that was started by a very devoted patient and her family member all the way back in 2001 to raise awareness and funds for this very devastating, progressive, and rare disease.
I’ve been attending the race every year and actually participating in the run of the race every year since 2008. It’s one of the highlights of my year every year just to be able to interact with PH patients, providers, drug suppliers, researchers. It’s a place where we all come together and celebrate patients who have this disease, celebrate the progress they’ve made, and remember those that we have lost to this disease.
This year, it’s happening as it does every year, on the first Sunday in November, November 5th at 9:00 AM. Please remember if you decide to register to register at www.med.stanford.edu/raceagainstph. We are still taking registrations even at this late hour. If you decide to come to the race, we always like to remind people to please remember the daylight savings time change. It actually allows you an extra hour of sleep before you come and support our cause!
One aspect of the Race Against PH is that we get to devote the PH Courage Award to one pediatric patient and one adult patient who has lived with this disease. Once a year, the Vera Moulton Wall Center for Pulmonary Vascular Disease strives to acknowledge a patient with pulmonary hypertension who has demonstrated exceptional determination, honesty, and resolve in battling this disease. A patient who validates the journeys of hundreds of others by being truthful in his or her own journey, acknowledging the hardships, cherishing the poignant moments of hope, looking forward to the promise of therapies on the horizon. A patient who surfaces as a natural leader and mentor and inspires all of us to press on fighting, press on teaching, press on researching, press on healing. A patient who serves as a powerful beacon of optimism for fellow patients, families, clinicians and scientists. A true PH hero.
This is a relatively new award that was created a few years back. It was a way for us as providers and researchers to give back to patients very directly. We enjoy, every year, nominating a few wonderful patients who have not only showed their own resolve with battling the disease, but have been really active in the PH community and have served willingly as mentors with starting the new therapies that might be amid the future of PH patients recently diagnosed, joining support groups, being active online.
Of course, we could nominate several to hundreds of patients a year to probably receive this award, but we really enjoy selecting one to focus on and allowing that person to tell their story. We really do find that patients are inspired and humbled and appreciative to receive this award, acknowledging what they’ve had to deal with dealing with this disease. It’s really sort of a wonderful give and take between our community and the patient community in that way.
I will say it’s always a very happy event, the Race Against PH, even for families who have lost members of their family or friends to this disease. They show up every year. Sometimes they sing and dance and run the loudest, because they’re still very much supporting the memory of the loved one that they’ve lost to pulmonary hypertension. They feel even more empowered in some way to sort of keep the race going in order to promote more research, hopefully more future therapies and more options for patients who are facing pulmonary hypertension.
Of course, we try to do some fundraising by participating in the race every year, but I do think that the most important part of what the race gives is a sense of community to the patients, to the doctors, to the researchers, to the people who help us develop drugs that battle this disease. We’re all able to unite every first Sunday every year and come together and participate in something with a common cause of raising awareness and remembering people that we have lost, celebrating people who have done well, and kind of regrouping so that we all leave with the idea that we’re making progress in this field.
I’m so proud to be part of the Vera Moulton Wall Center for Pulmonary Vascular Disease, which sponsors this race every year. Even through a pandemic, they were able to set up a virtual Race Against PH. We’re really committed to the cause and to the sense of community that this event provides.
I’m also forever grateful to the Ewing family whose generosity and innovation were so key in developing the event at the start. The Ewing family is here every year to celebrate their family member that they have lost, but also to carry the tradition forward.
So if you are in the Stanford area on Sunday, November 5th and feel inspired to come and support the Wall Center and the Race Against PH, please do so. All are welcome. You can register now at www.med.stanford.edu/raceagainstph. We’d love to see you there.
My name is Kristina Kudelko and I’m aware that my patients are rare.
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