Monday, October 31, 2011

Welcome to Awareness Month!

The Power of One
Awareness Month is here! To kick it off, here’s a post from Katie Kroner, PHA’s Director of Advocacy and Awareness. As you’ll see, there are Awareness Month activities going on around the world. I hope you’ll add your voice to the conversation! 

This year’s Awareness Month theme, The Power of One, reminds me of lots of remarkable things about the PH community. We’ve worked together to end isolation, growing from a community of a few to a community of thousands. Our advocacy has brought PH to the attention of the medical and pharmaceutical communities, taking us from zero treatments to nine—more than only two of the 7,000 identified orphan diseases. Most of all, The Power of One reminds me of the everyday heroes — each of you – without which we could not be where we are.

The first National PH Week was held November 2-8, 1997. PHA’s historical records note some important milestones during those early Awareness Weeks including growth of the support group network to 35 groups in 1998. (We now have 235.) Since 1997, PH Week has become PH Awareness Month and reaches across the country and around the word but its individual people, growing ideas into successes, that still make the PH community what it is. Here are just a few of the big ideas that will make Awareness Month 2011 a huge success:

·         Each year, the PH community requests Awareness Month Proclamations from their local elected officials, but when Doug Taylor issued a challenge for some state (any state!) to beat South Carolina’s record of 11 proclamations in one year, he started something big. On Facebook alone, 98 people have responded to Doug’s challenge. Perry Mamigonian has inspired Support Group Leaders across California to take on the challenge, but proclamations are also coming in from Maryland, New Jersey, Tennessee, Nebraska…you get the picture.

·         November boasts nearly twenty special event fundraisers aimed at supporting PH research and PHA programs. Organizers took their unique ideas and passions and turned them into community endeavors. Nicole Cooper is turning her first-time event vision into a reality with the Vision of Hope Gala in Maryland on November 12. Other first time events include a Zumbathon and chili cook-off. Many organizers have multiplied their impact by connecting with the media to promote their event and raise awareness of PH in their communities.

·         On November 1, more than 400 people used Facebook and other online tools to spread the word about pulmonary hypertension worldwide. One caregiver from Germany wrote to say that he has posted a PH web banner on his software blog, which receives about 2,000 visitors a day. That’s the power of one to raise awareness about pulmonary hypertension.

Individually, we are powerful. Together, we are unstoppable. How will you put your awareness raising power to work this November? Learn more and join our fight against PH!

Saturday, October 8, 2011

PHPN...a building block to a better future

The more that's going on...the less time there is to write about it. 

Since the Friday before last, PHA has had meetings for our Scientific Leadership Council, medical journal Editorial Committee, Research Committee, PH Professional Network (PHPN) Executive Committee, and PHA's Board of Trustees and its various committees.   I'll try to get time to blog about some of these meetings but I'll focus today on the largest of the meetings, the 2011 PHPN Symposium.

The Symposium is a three day annual meeting that takes place every two years.  Planned by PHA's allied health group, PH Professional Network, the event is an opportunity for education and networking in this rapidly growing field.  In recent years, the event has also supported the growing strength of this community of PH nurses, pharmacists, respiratory therapists, NPs, PAs, social workers and others who support the treatment of PH patients.

The Symposium is always held in the Washington, DC area where we begin with Advocacy Day.  Almost 100 of this year's record 465 Symposium registrants participated.  Not only did they have an important and worthwhile experience talking to their elected representatives on Capitol Hill about the Pulmonary Hypertension Research and Education Act but they bring that experience back to their medical centers and patients.

This year a special target for Symposium was increasing the number of abstracts and posters presented.  This is a shared learning opportunity and one for which PHPN leadership wanted to build the skills needed.  In order to do this, they knew they had to teach.  They created a new section of the PHA website on submitting an abstract for a poster presentation.  One of their founding members, Lisa Wheeler, research coordinator at the Vanderbilt University PH Center recorded a webinar, guidelines and samples were posted and mentoring was offered.  A Symposium that had no abstracts two events ago and very few at the last Symposium grew to 40 at this year's event.  The value of information exchange was huge not only for this meeting but is now a skill that exists within the community and will grow and be used at future symposia and other medical meetings for the benefit of medical knowledge in the field.

The educational program is always rich, This year's Symposium - chaired by Melisa Wilson, APRN, BC - with 60 expert presenters   delivering an information-filled program was no exception.  A real highlight was a plenary session entitled A New Dimension of Hope: Virtual Catheterization Lab presented by Russel Hirsch, MD, Cincinnati Children's Hospital and James Tarver, MD, Orlando Heart Center.  Rather than slides, Dr. Hirsh used a specially created animation of a heart catheterization.  It was a wonderful teaching opportunity.  Motivation is also a powerful Symposium element and this year's keynoter, Jessica Lazar MPA, PA-C , was a huge hit, telling her story of the Kilimanjaro Climb she and Drs. Benza and Frantz did for PH awareness. 

PHA had all the sessions filmed and they will soon appear on PHA Online University, enriching teaching opportunities for medical professionals around the world.

Since the first Symposium in 2003, I have watched these meetings grow from 60 attendees to, this year, well over 400.  They have become not only a cornerstone of medical education for allied health professionals in the field but they have also sparked stronger collaboration that is now taking place every day online and face-to-face.  Seeing the level of commitment and compassion, I have no doubt that PHPN has become an essential building block, leading the way to a better future for patients and their families.

Monday, October 3, 2011

Making a difference...

In recent years, our friend Hall Skara has been building PHA Norway into an effective voice for pulmonary hypertension patients in his country.  It's a great effort in a nation where there are not many diagnosed patients.

On September 25, PHA Norway held their national conference.  the event generated good  press coverage and and the 11:30 minute TV interview below.  Many thanks Hall for subtitling the interview in English!

I really enjoy blogging about PHA Norway.  They are a great example about how even a small community of patients, family members and medical professionals can make a difference.

Learn more about how PHA Norway got started and about the international PH community.