May 5, 2012: First World PH Day

In 2010, Juan Fuertes and Irene Delgado of the Asociación Nacional de Hipertensión Pulmonar (ANHP) began a quest.

They believed that it was time for the world to recognize pulmonary hypertension – and they believed that a World PH Day was the way to do it.  Like any new idea, at first there was skepticism but they continued to push forward…and soon people began to understand the possibilities.

They picked a day that has great significance to the Spanish PH community and will soon become a marker for our community worldwide.  May 5 is the date of the first recorded pediatric PH death in Spain.  That was 30 years ago.  Now that date will become a marker for greater global cooperation in the fight against this disease.

Five important goals have been set for World PH Day and endorsed by 34 organizations:

·       Increase awareness and disseminate knowledge of the disease to facilitate early diagnosis. Early diagnosis is important in decreasing premature PH related deaths.

·       Promote access to specific healthcare and treatments that increase quality of life and life expectancy.

·       Promote the concept of treating PH patients as a whole, which includes treating their physical,   psychological and social issues.

·       Unify international criteria for the recognition of Centers of Excellence in PH.

·       Promote research that will help find a cure for PH.

A program has been set for May 5 in Madrid.  It is not just an occasion.  It is an opportunity that I have no doubt we will grow in future years.

This year we can all begin to make World PH Day a reality.  At PHA, we will soon be asking you to adjust your Facebook status to recognize the Day...and in coming days we'll be announcing a lot of other opportunities to engage with our partners throughout the world as we work to make World PH Day a day with a purpose.

The amazing adventures of Steve and Lucas...

A few weeks ago, I wrote a blog titled Pediatric research: the power of one...and a half. It told the story of Steve Van Wormer and his ten year old son, Lucas and how they are building awareness of PH by creating public service announcements.

This is a story of people fighting to make things better; it's a story well worth updating.  Steve and Lucas are an inspiration to us all - showing us every day what’s possible when people decide to make a difference.

Here’s some of what’s been happening since my last blog…

Shortly after the first PSA was released, UCLA Health System issued a press release on the Van Wormer’s efforts.  This led to a number of stories, including blogs on emax Health News and The Baby Center.
Then came a surprise call from the actress Florence Henderson who Steve had worked with several years before.  She had been moved by Lucas’ story and offered her support.

There’s lots more in the works…but one more thing that should be mentioned now.  Steve was recently contacted by a voice over company.  They want to sign young Lucas to a contract!

Listen to Lucas and decide what you think?

This may turn out to be my most updated blog ever.  A few weeks ago Mollie Katz on our staff submitted Steve's PSA's for in WestGlen Communications 4th Annual Give Back Satellite Feed.  Today, (April 17), we got word that all four will be included in a satellite feed on April 19, where they will become available to over 1,000 TV stations!

Different notes, same page...

We always talk about PHA as a community of patients, family members and medical professionals.  Easy words, but expalining what that really means, that's harder.

Let me give it a try through the lens of PHA's leadership meetings.

Twice each year, PHA's leadership meets to discuss issues that keep the organization moving forward.  They are all volunteers who contibute of their own time and talents.  The most recent meeting was in Orlando (the city where we'll be having our Tenth International Conference in June).

Those leadership meetings occur in three parts...beginning on Thursday and continuing through Sunday.

The first is the PH Professional Network's Executive Committee.  These elected officers and committee chairs provide direction and leadership for over 1,100 nurses, pharmacists, respiratory therapists and other allied health professionals who are in membership.  What does that mean in practice?

Well, here's one example.  Stephanie Harris, Chair of the Education Committee, spoke about the recent publication of PHA's new EMS brochure.  It was written by PHPN volunteers serving on her committee, so that emergency techs coming to PH patients' homes would know how to work appropriately with a PH patient in crisis.  The brochure is  designed with a magnet to be placed on a refrigerator...where emergency technicians are trained to look for infoirmation.  Filling a great need, thousands have already been distributed.  Because medical professionals donate their time and expertise, PHA can make this brochure and other material available free.

After this day long meeting - with conversations and planning about activities ranging from the PHPN and PHA Conferences, a mentoring program, patient support programs, medical education, strategic planning and much more - ended, it was time to move on to the Scientific Leadership Council the following day.

The Scientific Leadership Council (SLC) is comprised of 27 physicians from six nations, all at the highest level of the field.  They are linked to the PHPN Executive Committee with the PHPN Chair (Louise Durst of the Mayo Clinic) having a voting role and to the PHA Board of Trustees through a patient liaison.  Harry Rozakis has just rotated off that role, replaced by Rita Orth.

When a new member comes to the SLC, I often will ask them if the meetings are what they expected.  Usually, the answer is that they thought it would be more about the science but quickly understood that it's much more about building the structure of the field.  That's particularly important in a complex specialty that has grown from about 100 treating physicians to over 10,000 in little more than a dozen years.

The SLC spent a lot of at their recent meeting discussing and planning management of PHA's multiple medical education activities, a new procedures document for Flolan use, PHA's research programs, the development of new guidelines for screening and diagnosis of PH patients with connective tissue disease, progress on our pediatric programs and a variety of other issues.  Dr. Bruce Marshall, the vice president of clinical affairs at the Cystic Fibrosis Foundation also gave a great presentation, helping PHA's medical leadership understand how that 50 year old organization has helped to develop important structure for patient care and research in their field.

While the SLC meeting was continuing on Friday, PHA board committees were also gathering in various rooms throughout the hotel.  The Conference Planning Committee, Strategic Planning Committee, Development Committee and Governance Committee all had important items to discuss. Those ranged from the many, many details related to our complex Conference and Scientific Sessions (150 or so invited speakers, including over 120 medical professionals come as volunteers covering all their owen costs, including registration) to working on continuing sustainability and clear direction for this structure called PHA that has been built to support the patients, families and medical professionals who live with PH.

The Board of Trustees meetings began on Saturday and continued into Sunday.  Led by Laura D'Anna, the board includes 23 patients, family members and medical professionals who live or connect daily with this illness and dedicate their efforts to create a better future for PH patients. The board is also fortunate to include the surviving founders as emeritus members. You can click on the board members names to find out more about who they are.

An important part of how the board functions is that its various leadership structures are tightly connected and reflect various parts of of the community.  The chair, chair-elect and immediate past chair of the Scientific Leadership Council have seats on the board.  So do the chair and chair-elect of PH Professional Network.  Six support group leaders are on the board.  There are four board members whose children were diagnosed at very young ages...as well as two PH pediatricians. And there are seven patients and six caregivers.  There are three who continue the fight in memory of a loved one.

While the board deals with a broad range of issues, this meeting included discussion of (among other topics) how we can use our assets to more effectively build public awareness of PH, better help patients and families deal with issues of life changes after diagnosis and, of course, make the upcoming Conference a life-changing event for those who attend.

So that's a quick picture of how PHA's volunteer leadership fits together across what has become a complex structure to provide oversight and planning and keep us in sync.

Facebook, Timeline and PHA...a banner opportunity

Chanda Causer is PHA's Patient Outreach and Services Manager.  Her team is involved in working with many of our new programs for patients and caregivers (including Generation Hope, PH Plus, Caregivers, Parents of Children with PH and Newly Diagnosed Patients.  They also put together a great many tools for patients and families and manage our e-mail Mentor Program.  And, Chanda manages PHA's social networking strategy...a really important effort to help us create awareness of this disease through Facebook Twitter and other electronic outlets.  As Facebook's new Timeline feature is coming online, we hope you'll use one of PHA's new Timeline templates (produced by Ellie Ganelin and Maya Mandaiker) on your page! Here's what Chanda has to say... 

PHA’s Facebook communication has come a long way. Our Facebook page was launched on October 7, 2009 and made 33 fans by the end of that day.  Over the years, it has provided a space for our PH community to learn, advocate and build relationships. It has served as an essential point of communication for those living with this rare illness across the US and around the world.  Today we have nearly 5,500 fans around the globe. 

PHA is moving to the new Facebook Timeline feature, which will reformat our Facebook layout by creating a new panoramic space for images. As you may know Facebook will transition all users to this new format on March 30.  In preparation for this switch, we’ve created five banner options for our Facebook fans.  We hope that all of our Facebook fans will use the PHA-centered banners to build awareness and spread the message of hope for those living with PH.   

Facebook continues to provide a platform for us to further our mission of providing hope for the pulmonary hypertension community through research, support, education, advocacy and awareness. We are building a well-informed social network. Please visit www.facebook.com/PulmonaryHypertensionAssociation today and share a memorable PHA moment with us...and choose the PHA Timeline template you like best! 

Rare Disease Day... February 29

Today is Rare Disease Day.

To mark the occasion, PHA partnered with the American Thoracic Society and pulmonary fibrosis groups for a Congressional briefing on pulmonary hypertension and pulmonary fibrosis.  About 40 Congressional offices sent representatives - many because our volunteer advocates contacted them and asked. 

Dr. Susan Shurin, the Acting Director of the National Heart Lung and Blood Institute, hosted and Dr. Seril Erzurum of the Cleveland Clinic and Chair of PHA's Research Committee told the story of the development of PH research and the encouraging story of where she sees it going.  As she spoke of the 9 treatments developed across three unique pathways (endothelin, nitric oxide, prostacyclin) - with two Nobel prizes given for this work - she spoke of new targets and movement towards a cure and the importance of research in this field to other diseases as well.  Her presentation was inspiring but no more so than Nicole Cooper's who spoke movingly of her own journey with PH from diagnosis to her recent operation to remove arterial clots (CTEPH).

When I came back to the office, I read Colleen Brunetti's great blog for Rare Disease Day.  Colleen, a fine writer from the mind and heart reminds us that a disease is not rare if it is in your own body, that treatments are not a cure. 

I encourage you to read Colleen's blog, too.

Pediatric research: The power of one...and a half

It never fails...

One person deciding to take action becomes a driver for a whole community.

Last Friday, PHA board member Steve Van Wormer e-mailed us a public service announcement he had made to support the pediatric research and mentoring that has become an important target for PHA.   We were all very pleased by the the great quality of what he put together...and especially the voice work of Steve's 9 year old son, Lucas.

When we receive a new tool for the community, we always put together a marketing plan to make sure that it is used for the most benefit. 

This time was a little different...

Steve and Lucas' work so obviously filled a need that the small number of people who received it began to move immediately.  It's already being embedded on Facebook pages and pushed out in other ways. 

At its conclusion, it links to the Robyn Barst Pediatric Research and Mentoring Fund which is close to its target for beginning operations.  That Fund page includes information and videos from doctors and parents talking about the importance of pediatric research and creating a body of physicians mentored to capably treat children with PH.

Little more than twenty years ago, PH began to develop as a research and clinical focus.  Now, we are beginning to see - and help drive - that growth among physicians working with children.  While broad PH research remains of critical importance and of benefit to all, pediatric PH research and developing knowledge and understanding of appropriate treatment of children with PH is coming into its time.

What people like Steve and his son, Lucas, are doing in support of the doctors who are building the pediatric field is making that time come faster.  It's a great partnership.

We encourage you to help further circulate the video at the top of this blog.  You can find it here.  Please click on "Like" and you'll be asked if you want it placed on your facebook page...please do. 

Right now, we're working on making e-mails available with an image of the video in them.  I'll update this blog when those are ready

Bruno Kopp: leader, hero, friend...

We still lose too many to this disease...and today we lost another.

Today, it was Bruno Kopp, the leader of the German PH association, PHeV.   He founded the organization in 1996 for the same reason that PHA's founders began ours...to help end isolation.  Five years later, he organized the Rene Baumgart Foundation to raise money for PH research.

Rene Baumgart was Bruno's nephew, a nephew who had lost his mother to PH at the age of 10.  Rene, himself, passed at the age of 19.  I remember Bruno telling me that he became so angry about his nephew's loss, he created the Foundation to forge meaning from what had happened.  You see Rene and his mother weren't Bruno's first loss to this disease.  Fifteen of his family members, including Bruno, had been diagnosed with PH.

In 2006 and 2011, I was honored to stand next to Bruno in Frankfurt and speak at both the 10th and 15th annual Conferences of PHeV and, this year, had hoped that Bruno would be able to make the trip to Orlando in June to PHA's 10th bi-annual Conference.  I am sad that will not be.

During PHeV's 10th Conference, I had been going through some difficult issues.  One evening, Conference attendees were treated to a wonderful caberet performance.  Bruno had asked me to sit next to him.  At one point, he stood and dedicated the next song to me and to PHA.  The song was Carole King's, You've Got a Friend.

Bruno, you were a good man who took the hard things that came into your life and turned them into good for many people.  You were - and are - a hero.

You will not be forgotten...you've got a friend.