Awareness Month…planes and trains and other things

Zebra in the Fresno crowd

PH Awareness Month...  

It’s a footrace – an important footrace – with a lot of zig zag.  To explain, I’m using this blog to fill out what I wrote in earlier blogs and talk a bit about what I saw and did as I traveled for PHA just before and during this important time for building PH Awareness.

Personally, Awareness Month is also a time to feel the pulse of our community and better understand the effectiveness of current programs and future directions.

When I first came to PHA in 1999, there was little time or financial ability to travel but I was struck by the Awareness Week (that’s what it was then) pioneers who were tabling at several hospitals around the country.  They were the backbone upon which we built the great Awareness Month activity we are seeing today. 

As always, my November Awareness Month travels began in late October.  On the 23^rd of the month I made my first stop in Denver to attend the induction of Dr. David Badesch into the Colorado Pulmonary Hall of Fame.  Dr. Badesch is one of the great clinicians and researchers in the field and a friend who helped build medical side of PHA’s work.  It was wonderful to see him receive this great honor.

After less than 24 hours in Denver I went on to Fresno, California.  Many months earlier, I had promised Dr. Vijay Balasubramanian, Director of the PH program at UCSF Fresno, and Perry Mamagonian, the very active Fresno support group leader that I would be there.  The night before the event, On October 24^th, I had dinner with Dr. Bala as he is called and several administrators and staff at his hospital.  He said to me, “You know, we have worked hard to build a strong PH program here in Fresno.  When I looked at PHA’s PH Care Centers accreditation guidelines, I saw that we had everything needed…except a nurse coordinator.  I went to my hospital administrators and told them that I believed the accreditation program is important and asked their help.”  What he said next was striking in realizing how the new PHCC program is already improving quality of care for patients.  “My administrators supported me. Meet my new nurse coordinator.  She started last week.”  He went on to describe how his nurse coordinator was already tapping into connections with other nurse coordinators from PHA’s PH Professional Network (PHPN) for mentoring.  Knowing all the work that has gone into building the PHCC accreditation program, it was striking to see how it is already beginning to impact practice for the good of patients.

 On Saturday October 25^th, I attended the Fresno Annual Fun Walk.  I was impressed at how many people came and reminded how important it was to have a PHA presence at such events.  I truly wish we had the opportunity to attend all these great events…but with an annual calendar that includes 90 special events, 60 PHA medical education meetings, 15 Building Medical Education in PH meetings, 4 regional patients conferences and quite a bit more, that has become sadly impossible. We have grown to have one PHA meeting almost every two days.  All are important in our quest to change the history of this disease…whether or not we are staffed to attend.

Later in October 25^th, I flew to Austin, Texas for the annual conference of the American College of CHEST Physicians.  PHA attends conferences like this where we exhibit and connect with medical professionals, develop alliances and host our own committee meetings.  CHEST is always a good opportunity for all these things. In the Austin airport I saw the banner to the right.

After several days back at the office, I attended the Baltimore Zoo Walk on Sunday, November 2. Later in the day, I traveled to San Francisco for two days of meetings with our corporate partners at Actelion and Gilead.  It is an opportunity to let them know how we have used their financial support during the past year and where the organization is heading in the next.  At Actelion, I had the opportunity to speak to their staff at their Awareness Month Kickoff Luncheon.

On to New York City on Nov. 6 for two events.  First, a visit to NASDAQ where our PSA's played on the NASDAQ stock exchange screen (the largest screen in the world!). Then on to our New York Chapter Gala.  It was a terrific event honoring Dr. Evelyn Horn as a pioneer in PH and her patient, singer Chloe Temtchine and Shad Azimi.  Jeffrey Hayzlett, host of Bloomberg TV’s C Suite was a great MC.

After the New York Gala, I headed to Syracuse for the Sarah Smiles event, held at the Camillus, NY Fire Department.  It’s an event I had been hoping to get to for several years.  I had met Sarah Peek and her parents Michelle and David and little brother Nathan in 2009 at the Long Island Support Group Fun Walk.  Sarah was a lovely 6 year old whose spirit

really struck me…and whose loss in 2010 was deeply saddening.  It was great to see Michelle and David again at this annual fund and friend-raising tribute to Sarah – and to meet Sarah’s grandma, Bonnie Corey, who I’d previously spoken to by phone.

From Syracuse I headed back to the office for four days of 2015 budget sessions.  Twenty-two budget presentation meetings were held on Monday, Tuesday, Wednesday and Friday during the week of November 10.  Thursday was reserved for PHA’s Annual Congressional Luncheon.  This was a well-attended event which included encouragement from Sen. Bob Casey of Pennsylvania and NHLBI Director Dr. Gary Gibbons and Congressional office visits by the many patients, family members and medical professionals who attended.  Before the event, many of PHA’s members called their Members of Congress requesting that they or someone from their office attend the luncheon and saying that they would call back to hear how it went.  As always, our community’s efforts at the local level really helped build Congressional interest and attendance and our clout at the national level.

Shortly after the last budget meeting at 4pm on Friday November 14, I headed back to the airport for a late flight.  This time it was a little different.  I got to spend the weekend with my daughter and son-in-law in Germany before continuing on to Paris to meet with leaders of European PH Associations (including France, Germany, Italy, Hungary, Norway and the United Kingdom).  As the number of PH associations continues to expand globally, meetings like this help to us all to collaborate better and find ways to build programs of value to our communities.  While I was in Europe, PHA launched the first CTEPH Awareness Day as part of PH Awareness Month with great participation.  It was exciting to see that our European partners were already aware of and excited about tis new effort.

Following the European meetings, I flew to Chicago for PHA’s Midwest Chapter Hearts Phor Hope Gala on November 22.  I particularly wanted to be there to acknowledge Dr. Stuart Rich who was receiving an award for his career-long and ground-breaking work as one of the founders of the field of pulmonary hypertension.

The next morning, I flew home for more budget work and a very quiet and restful Thanksgiving!

There is so much that I saw during Awareness Month 2014…and much more that I could not see. 

PHA is based on the principle that a strong community can change our world for the better. 

Awareness Month is one important and vibrant proof of that principle.