Dear PH Community,
For me, January always is inspiring and energizing, in part because the new year represents hope, possibility and anticipation. I look forward to the year ahead and the chance to work with so many of our pulmonary hypertension (PH) community members and staff to realize the many goals we have set for ourselves at the Pulmonary Hypertension Association (PHA). Every year we create an annual plan that aligns with the key focus areas in our Strategic Plan and helps us advance our mission to extend and improve the lives of those affected by PH. This year’s plan gives us plenty to get excited about, and I’d like to share with you a sample of what lies ahead in 2019.
Advocate for the PH Community
Raising awareness about PH continues to be a critical part of the work we do, and we look forward to your continued partnership as we get the word out during PH Awareness Month, CTEPH Awareness Day and World PH Day. We also will improve PHA’s advocacy action center so that we can better educate and lobby state legislators and regulators on issues important to the PH community. Watch for more information in the months ahead.
Catalyze Research for a Cure
Each year, many in the PH Community find hope and inspiration in the awarding of our annual research grants. We look forward to the promise and potential of the results and discoveries to come from our 2018 grantees. Congratulations to the following researchers for advancing PHA’s mission through your groundbreaking work:
- Soban Umar, M.D., Ph.D.
- PHA/ATS Research Fellowship in Pulmonary Arterial Hypertension
- Zhiyu Dai, Ph.D.
- The Aldrighetti Research Award for Young Investigators Award
- Michael L. O’Byrne, M.D., MSCE
- Robyn J. Barst, M.D., Pediatric PH Research and Mentoring Program in memory of London A. Lotarski
Empower Patients and Caregivers
What all of us wish for – a cure for PH – is the driving force behind PHA’s new PH clinical trial website that will launch soon. This new patient resource includes a searchable trial finder and educational videos that will help individuals with PH learn about clinical trials and how to learn more. PHA will continue to provide new resources that help patients, caregivers and families learn about and manage PH. In 2019, PHA plans to expand its pediatric resources and create new materials for patients with CTEPH and people who have had an acute pulmonary embolism. We’ll also start disseminating our new PH & brochures, a series of 13 pamphlets that address PH screening, diagnosis and treatment options for people with associated diseases and conditions that carry a higher risk for PH such as COPD, HIV, liver disease, sleep apnea and lupus. For those who prefer audiovisual materials, we’ll provide more video resources for our online PHA Classroom on a range of educational topics.
Promote Quality Patient Care
We look forward to hosting our biennial PH Professional Network (PHPN) Symposium in early September, educating health care professionals so that they can provide individuals of every age with PH the very best care and the latest information. PHA will also add accredited educational activities to PHA Online University, used by PHA’s medical professional community to maintain their continuing education. We’re also happy to see our Pulmonary Hypertension Care Centers (PHCC) network expand as more and more accredited centers with expertise in pulmonary hypertension help improve the access to quality care for individuals with PH.
Ensure Financial Resources to Achieve Our Mission
The programs and activities that PHA and our PH community conduct in the areas of research, quality patient care, patient and caregiver support and advocacy work require dependable financial resources. We are thankful for our corporate sponsors and to our PH community for their contributions to our mission. Thanks to our energetic and committed PH members, we look forward to two additional fundraising walks in 2019: The Tampa O2breathe Fun Run and Walk on Feb. 2 and the Northern Virginia Walk on May 4. We hope to see both new and familiar faces as we travel to Tampa and Alexandria this year! Later this year, we’ll be reaching out to all of you in our PH community to gather insights and data that will be used to update our strategic plan for the following three years. In the meantime, please let me know your thoughts and ideas at gro.noitaicossAHP@AHPgnoWdarB. I look forward to hearing from you.
Brad A. Wong
PHA President & CEO