We started out with the PH Centers of Care meeting that Wednesday. Four committees that have been developing an accreditation system to help improve PH knowledge and quality of care met under the leadership of Dr. Murali Chakinala (University of Washington). It was an exciting meeting as we get close to piloting the system in early 2014.
The next day PHA’s Scientific Leadership Council (SLC) meeting brought together our medical leadership to discuss medical education initiatives, PHA’s research program and medical programming for PHA’s upcoming International PH Conference and Scientific Sessions. SLC meetings take place twice each year. Dr. Richard Channick (Massachusetts General Hospital) chairs the SLC.
The same day about 100 medical professionals traveled to Capitol Hill to meet with their legislators and discuss the Pulmonary Hypertension Research and Diagnosis Act which will bring together various government agencies like the National Institutes of Health, the Centers for Disease Control and the Department of Health and Human Services to meet regularly to coordinate their work and discuss progress on pulmonary hypertension. Many of the medical professionals are planning to take what they learned about lobbying back to their own communities where they will share it with patients and their families.
The SLC meeting led directly into the three-day PH Professional Network Symposium, The Power of Teamwork: 10 Years of Professional Collaboration in PAH. The PH Professional Network (PHPN) is PHA’s membership network for 1,300 nurses, nurse practitioners, physician assistants, pharmacists, respiratory therapists, social workers and other allied healthcare professionals. With educational sessions featuring everything from echo interpretation to exercise right heart catheterization, this year’s Symposium – a major medical conference – celebrated a decade of growth and continued cooperation among PH-treating healthcare professionals. More than 400 medical professionals working in PH attended this meeting which only takes place every two years.
|Lillian Hansen, NP-C, MSN, MS, MEd, (pictured right) and |
Franz Rischard, DO, MS, both from the University of
Arizona Medical Center in Tucson, Ariz., present during the
Symposium session entitled Exercise Right Heart Catheterization.
During Symposium, the editorial committee for PHA’s medical journal, Advances in Pulmonary Hypertension, met to begin planning for the future. Dr. Myung Park began her new role as the journal’s medical editor, and she and the editorial team mapped out the next four issues of the quarterly journal. The upcoming topics will be:
- PH and parenchymal lung disease
- Chronic embolic pulmonary hypertension (CTEPH)
- Proceedings of the Fifth World Symposium on Pulmonary Hypertension in Nice, France
- The right ventricle
As the PHPN Symposium came to a close, the PHPN executive committee members met to plan their upcoming projects. This group spends a great portion of its time planning the development of educational material for PH patients and their families. One of the executive committee’s most recent projects includes updates to the School Resource Handbook, a tool for PH parents to share with their child’s teacher. The updated version of the Handbook will be available soon on PHA’s website.
These first six meetings and activities wrapped up on Sept. 29, and a new round began on Oct. 1 when the executive directors and their staff from PHA’s three chapters came to PHA headquarters in Silver Spring, Md., for two days of training, conversations with headquarters staff, and 2014 goals and budget planning. Throughout 2013, our chapters – located in the N.Y. Tri-state area, the Midwest and the San Francisco Bay area – have been hosting fundraising and awareness-raising events across the country and laying the groundwork for future growth. You can follow their activities at www.o2breathe.org.
As our chapter staff meetings concluded, PHA’s Corporate Committee meetings began. This committee, comprised of 14 pharmaceutical companies in the PH field, meets with PHA three times a year to discuss how to best support the PH community and our efforts. October’s meeting focused on support for a number of initiatives, including PH advocacy, PH Awareness Month and PHA’s early diagnosis campaign.
Finally, on Oct. 4 through Oct. 5, we hosted a meeting of PHA’s Board of Trustees. This all-volunteer Board meets twice a year, and this meeting focused on a variety of topics, including PHA’s International Conference and Scientific Sessions taking place in Indianapolis, Ind., on June 22-24, 2014.
And if this sounds like a lot, it doesn’t stop there. Throughout this period of time and continuing during October and into PH Awareness Month in November, we have a large number of special events taking place across the country. On Oct. 6, I was able to attend the Baltimore Walk for Hope, which tripled in size from last year. And this past Saturday, Oct. 12, was a big event day for PHA with the Dallas/Fort Worth Walk, the Long Island Walk, the Baltimore Pub Crawl, our first Color PHor a Cure event (watch the video!), and the launch of the PHA Midwest Chapter’s Blue Lips Campaign. I was fortunate to attend the Color PHor a Cure event in little Jennings, La., which drew more than 2,200 registrants.
|We celebrated the end of the race with color explosions every five minutes.|
We have so much going on, and as November draws near, we will continue to get busier and busier, spreading awareness of pulmonary hypertension and engaging the entire community in our quest for a cure. I invite you to check out our events website to see what’s going on in your area, and I will continue to blog as we go. I hope you will join us on the journey.