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 23rd 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 24th, 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
25th, 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.
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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.
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.
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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.
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.