Dear PHA Community,
While we keep in regular touch with many in our Pulmonary Hypertension Association (PHA) PHamily online — through PHA News and other e-communications, our website, online support groups and our social media platforms — we are also highly committed to connecting with our Community in person – through more than 200 local support groups and 45 local fundraising and awareness events, as well as local educational forums. That’s why we can’t wait to be “on the road” this weekend as we travel to San Francisco on Saturday for our first PH Patients and Families Education Forum in 2019.
As many of you know, PHA on the Road is a great opportunity for us to meet with you face-to-face, and it’s also a wonderful way for you to learn about the latest information on pulmonary hypertension (PH) from local PH experts who live in your community. We offer a day full of interactive sessions with health care professionals who will present information on the required tests for accurate diagnosis, available treatment options and information on clinical trials, as well as the important lifestyle adjustments that allow you to live your best life with PH. You’ll also be able to meet and talk to other patients, caregivers and PH medical experts in your region – some of whom will be old friends and others who will be newcomers to the PHA Community.
Thanks to the generosity of our PHA volunteers and sponsors, we are thrilled that PHA on the Road continues to be provided at no cost to participants. A very special thank you to our San Francisco Co-Chairs, Dr. Teresa De Marco of the University of California, San Francisco, and Dr. Sachin Gupta of CPMC-Sutter Health, who have led the PHA on the Road-San Francisco Planning Committee in months of work to put together a compelling program and find speakers for Saturday’s program.
Topics such as “Physical Activity, Exercise and Pulmonary Rehabilitation in PH,” “Understanding and Navigating Health Insurance” and “Optimizing Your Therapies: Changing and Combining PH Therapies” are just a few of the sessions available to Saturday’s attendees. For parents who have a child with PH, the planning committee has organized a special breakout session, “Ask a Pediatric PH Expert.” This interactive discussion-based session allows dedicated time for parents and families of infants, children and teens with PH to ask questions about pediatric PH diagnoses and available surgical and medical treatments, as well as other topics of interest to participants.
We are very grateful to our keynote speaker, Mona Singh of Petaluma, Calif., who will share her story of living well with PH. A big thank you as well to our local PHA support group leaders who serve on the PHA on the Road-San Francisco Host Committee. Thanks to this committee, Saturday’s attendees are offered the chance to connect with individuals who live in their region who are either newly diagnosed, continuing their journey with PH, care for someone with PH or who have a child with PH. For many in our Community, these support groups offer a rare opportunity to connect with others who share similar challenges and provide a continuing source of support, inspiration and hope.
We couldn’t offer this program without our sponsors, some of whom will be on hand on Saturday to provide information and answer questions. Visit PHA’s website to learn more about Saturday’s PHA on the Road, or to find out about the next PHA on the Road coming to Kansas City, Kan., on Oct. 12. Our Kansas City Planning Committee Co-Chairs, Dr. Leslie A. Spikes and Dr. Timothy L. Williamson, both with the University of Kansas Health System, are busy putting together an exciting program for our event.
If you can’t make it to our education forums this year, save the date for our PHA 2020 International PH Conference and Scientific Sessions coming to Anaheim, Calif., June 12-14, 2020. We will be providing more information on PHA 2020 “Vision for a Cure” later this year at PHAssociation.org/PHA2020.
Please take a moment to share your thoughts and comments about what type of programming most interests you by emailing me at BradWongPHA@PHAssociation.org. I look forward to hearing from you.
Brad A. Wong
PHA President & CEO