Pathlight Summer 2016 - (Page 7)

MESSAGE FROM THE SLC CHAR Letter from the PHA Scientific Leadership Council Chair " 25 Years of...." is the oft heard refrain this year for good reason. PHA has evolved in size and scope in ways that would seem impossible but were accomplished with the clarity of the mission and the amazing talents of the community. After I was asked to write a guest editor letter for this edition, I pondered what I could add to the story of PHA. But then I realized that my journey as a PH health care professional mirrors much of the PHA story. As I began my internship in 1992, I had never heard of PH (if it was mentioned in med school I certainly don't recall it!) until I was taking care of a patient in the CCU who was being tried on calcium channel blockers. Sadly, the patient died and I was taught that there was really nothing to do for these patients. Thankfully a few years later, as a pulmonary fellow, I was assigned to work with a PH specialist and quickly fell in love with PH and the courageous patients. Contrary to my first PH experience, I learned there is hope. I decided to focus my career on PH. Central to my growth as a PH professional is PHA. What I didn't expect was how central PHA has become for me personally. I attended my first Conference and was overwhelmed by the sense of community and commitment and was eager to serve in any way I could. I was appointed to the SLC Research committee as my first "official" engagement and learned much more about PHA and its mission. Since that time I have been privileged to serve PHA in so many ways, from speaking at Conference, to serving on multiple committees including the SLC where I am the outgoing Chair, to being on the Board of Trustees. So how is this similar to the growth of PHA? Much like the need of the PHA founders' to find others to connect with, I needed to meet other medical professionals to learn more about PH, develop a professional network, promote research to identify effective treatments, and to increase awareness of PH. I needed to connect and learn and grow in my approach to treatment of PH patients. But then I realized that just like effective communities everywhere, my community needed me as much as I needed it. Serving PHA any way I could was the best way I could give back. In giving back, I have received so much more. It seems almost impossible that we have come this far: PHA programs serve to educate and promote early diagnosis and appropriate treatments. More than $17 million in PHA research dollars is targeting the goal of identifying more effective treatments. Developing the PH Care Center accreditation program and the associated patient registry is providing the foundation for patients to seek quality PH care and participate in research. A network of "PHAs" and Serving PHA any way I could was the best way I could give back. In giving back, I have received so much more. support groups now exist across the world. We lead advocacy in PH early diagnosis, access to care for all, and research. And in only 20 years, 14 FDA-approved PAH treatments are now available. I fully expect that PHA will continue to play a unifying role in the goal to develop and make accessible treatments that lead to normal, full lives for our patients. Being part of that makes me incredibly proud. I have also made a commitment to support the mission of PHA with dollars in addition to my time as a volunteer. I like the feeling of putting "my money where my mouth is" and knowing how that money supports the cause I believe so deeply in. I have received so much more from PHA than I have given. I have developed a network of friends and colleagues around the world who support me and provide advice in my professional life. I have made many friends with the staff and other PHA volunteers that I cherish greatly. I have had opportunities for personal growth through PHA that I would had not have had elsewhere. Bringing my daughters to Conference so they see the power of coming together, see who the people are who occasionally take me away from them, and watching them make new friends and understand that having an illness does not make them any different has made them better people. I can't envision any better life lesson for them and am grateful to PHA. I could not imagine not having the gift of PHA in my life, professionally and personally. I cannot wait to see what the next 25 years look like! Karen A. Fagan, MD Chair, Scientific Leadership Council, 2014-2016 WWW.PHASSOCIATION.ORG 7 http://WWW.PHASSOCIATION.ORG

Table of Contents for the Digital Edition of Pathlight Summer 2016

Message from the Chair
Message from the SLC Chair
Quick Takes
PHenomenal Lives
Family PHocus
A Day in the Life of a PH Physician
Research Corner
GO PHAR Research
Ask the Expert: Post-PE Monitoring
End-of-Life Conversations: Tough Questions & Important Answers
Lantos Highlight
Conference & Leadership Changes
Chapter News
Advocacy PHact or PHiction? Test Your Knowledge of PH Advocacy
Calendar of Events
Question of the Quarter:

Pathlight Summer 2016