Tuesday, October 29, 2013

Racing Toward ... PH Awareness Month

Welcome to Pulmonary Hypertension Awareness Month! This November, the PH community is Racing Toward a Cure. In fact, PHers have been racing toward Awareness Month for weeks now, getting an early start on everything from special events to media coverage. As I write, November is still a few days off, but take a look at just a few of the things that are already underway.

Hear ye, hear ye, PH Awareness Month proclamations are coming in from every part of the country.

Golf, Galas and 5Ks! PHers and their loved ones are hosting more than a dozen special event fundraisers during November alone. Check out PHA’s event calendar for one near you.
The annual Sarah Smiles PHun-Raiser kicks off our Awareness Month event lineup this year.

In the news, Joy and Vernon Gore, Janet Mabe, Diane Ramirez and others used PH awareness events taking place in October to garner news coverage announcing that November is PH Awareness Month. Read Joy’s story | Read Diane’s and Janet’s stories
Diane Ramirez (left) and Janet Mabe created a unique Unity Miles event in solidarity with Team PHenomenal Hope, the all-women's cycling team racing across America in 2014. Together, Diane and Janet walked more than 100 miles in 30 days.

Awareness of every shape and size. Whether it’s an awareness table, a class presentation, a personal fundraising page or Facebook posts, PHers are finding unique ways to put their talents to work for PH awareness.
The Bowling family raises PH awareness.

Not long ago, PH Awareness Month didn’t exist. Instead, we had an awareness week focused on setting up information tables in hospitals. Thanks to the work of those first advocates, and all the advocates who have followed, the power of the PH community has grown.

Today, everything you do represents more that we can do. Your awareness-raisers and fund-raisers will translate into better treatments, earlier diagnosis and eventually a cure. Thank you.

There’s still time to get involved this November. Nov. 1 is PH Online Awareness Day, and there’s still time to participate in the Congressional Luncheon and National Advocacy Day on Nov. 12.

We’ll share opportunities and success stories throughout the month. Don’t forget to share your stories with us!

Wednesday, October 16, 2013

Eleven busy days … building better tomorrows

At PHA, we’re always busy, but recently, we hit a streak that’s worth writing about. In an 11-day period from Sept. 25 to Oct. 6, PHA hosted nine PHA-managed meetings and activities. Here’s a snapshot of what we’ve been doing.

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:
The journal is mailed to more than 40,000 medical professionals around the globe and is also available online at http://www.PHAOnlineUniv.org/Journal/.

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.

Wednesday, October 2, 2013

Football, Pumpkins and PH Advocacy!

Here’s a guest blog from Katie Kroner, PHA’s Advocacy and Awareness Director. The PHPN Symposium was an important and exciting event – with many other activities built around it – and I look forward to writing more about it after our Board of Trustees and other meetings this week.

Here at PHA headquarters in Maryland, we get just as excited about fantasy football and pumpkin carving as the next person, but nothing says fall at PHA quite like the way we ramp up our face-to-face advocacy efforts.

Lauren Johnson, RN (left), with
Rep. Lois Capps, a sponsor of the
Pulmonary Hypertension
Research and Diagnosis Act.
Last week, more than 400 allied health professionals from across the country traveled to the D.C. area for our 2013 PH Professional Network Symposium, The Power of Teamwork: 10 Years of Professional Collaboration in PAH. To kick off the Symposium, nearly 80 PH Professional Network members visited 60 senators from 30 states and asked them to co-sponsor the Pulmonary Hypertension Research and Diagnosis Act. Advocates received a warm welcome and lots of positive feedback from legislative staff about the new PH bill. In particular, the fact that the new bill doesn’t call for any additional government spending made it something more offices were willing to consider co-sponsoring.

PHPN Advocacy Day was also an empowering experience to participants who had never visited their Members of Congress before. One first-time advocate described the day as “a great way to stand up for patients that I take care of in the hospital setting and to let people know about the disease.”

What’s next for PH advocacy? I’m glad you asked!

PHA’s annual Congressional Luncheon is less than six weeks away on Tuesday, Nov. 12 and you’re invited!

PHA’s Congressional Luncheon & National Advocacy Day
Tuesday, Nov. 12
Cannon House Office Bldg, Room 345 Washington, D.C.

The luncheon is free to attend, and transportation is provided from PHA's office.
RSVP to us by email or by calling 301-565-3004 x753
The Congressional Luncheon is an opportunity to make a powerful impact in Congress, advancing our work for accurate diagnosis and a cure for PH. Even if you can’t attend this free event, I hope you’ll join me in inviting your Members of Congress. Then, share this post with ten friends and ask them to either attend the Luncheon or invite their Members of Congress.

Next week we’ll be posting sample messages on PHA’s website that you can use to invite your senators and representative to the event. Learn more about participating in National PH Advocacy Day.

Stay tuned for Congressional Luncheon updates in PHANews and this blog for more about the PH Professional Network Symposium, the strength of teamwork within the PH community, and the amazing examples of all we can accomplish together.