Our New Board Chair: Transition and Transformation
Leading up to Rare Disease Day 2023, we caught up with Dr. Hap Farber and Dr. Patty George to talk about exciting changes on the horizon for Team PHenomenal Hope. This blog is a transcript of their conversation. By way of introductions, Dr. Patty “PG” George is the co-founder, athlete, and served as president for the first 10 years since Team PHenomenal Hope’s creation. Now, she has passed the baton of board chair to Dr. Hap Farber, athlete, former Team PH vice president, Team PH visionary, and all around good guy.
PG: Hey Hap.
PG: So Hap, I’m so excited that we finally get to have this conversation and introduce you as our new Board Chair of Team PHenomenal Hope. I am so excited about your vision and where this organization is headed. Let’s start there. Tell me about your vision for Team PH.
Hap: First, obviously, we would not be having this conversation without the accomplishments of PG, who, to be honest, conned me into this in the beginning, and I just couldn’t let it go. Obviously you’ve done a phenomenal job bringing Team PH to this point. We share similarities in vision of where this is going, but since we are different people, this gives me an opportunity to expand some of our ideas and to try to develop new ones. Ultimately the vision of Team PH is to become the preeminent entity in pulmonary hypertension for patient support and advocacy.
To that end, we have in mind several initiatives in this next year. We plan to become more involved in medical conferences, including ones that we sponsor. We hope to initiate a program for children with PH, an area that has been woefully underrepresented. This will involve bringing PH kids and their parents together for a day to have fun in different areas around the US. In order to accomplish these and other goals, we plan to expand our web platforms and social media presence to disseminate more information and achieve our goals.
We are more focused than ever on programs that help disseminate useful information to the PH community. One such entity is the Learn, Live, Breathe PH website, launching officially on Rare Disease Day at learnlivebreatheph.org, and you should probably talk a little bit about that.
PG: Yeah, thanks for mentioning it. I am so excited about this new website. While there is a lot of good information out there through multiple organizations, what I had always hoped for was a crisp and clean platform to provide accurate information in a concise way that helps walk those with PH through their diagnosis and treatment of the disease. This website was funded through the Chest Foundation Community Service Grant, and the content was created by fellow physicians, nurses, and nurse practitioners, and then reviewed by our medical experts. Our goal is that it will empower patients as they live with PH. And this website will breathe as well, as it continues to evolve with the development of new medicines, and new understanding about PH. Speaking of new understanding, isn’t the research award happening soon?
Hap: Yes, we are in the process of actively seeking applications for our Team PH Global PHenomenal Impact Research Award, which has been instrumental in funding new investigators in the field, and has already contributed to the advancement of the novel ideas of several individuals, moving us closer to the ultimate goal of curing the disease.
PG: Yeah, this will be our 5th year funding research, and I know that for many people, including myself, this is a key part of the legacy of Team PH. What is really cool about this is that this award grew directly from the Pittsburgh PHenomenal Hope 5K, started by Julia Feitner, who lives with PH and continued by Kayla Frattini, who lost her mom to PH. These funds are literally from the sweat equity of the organizers and athletes who have participated in this event.
Hap: While we have only been able to fund one project per year, despite having multiple meritorious submissions, hopefully we will be able to expand the program to more than one project per year.
PG: And by the way, this year is the 10th anniversary of the PH5K! So make sure you join us in Pittsburgh on April 22. Will you be there, Hap?
Hap: I’ll be there.
PG: Speaking of this athletic event, I’ve had the fortune to ride as your teammate in several biking adventures, and I can attest that you are quite the athlete.
Hap: You could say that I have spent most of my adult life as an athlete, whether riding my bike, running, adventure racing, competing in triathlon and now I enjoy biking and skiing. Some of my most memorable and painful episodes of ultra biking have occurred with the one and only PG.
PG: Ditto. From New Zealand (twice) to Germany to Breckenridge, we’ve definitely had some memorable adventures. So before we finish our conversation, is there anything more you want to say about Team PH?
Hap: Yes – we think everybody who has been touched by this disease, whether as a patient, caregiver, healthcare provider, or friend of a friend with PH, should join us in this fight to help improve patients’ lives and outcomes, expand access to care, and at some point cure the disease.
You can join Team PH today as an athlete or as a patient in our Let Me Be Your Lungs Program or donate today at teamph.org.