Wednesday, August 6, 2014

Pathlight: A Look Back at Our History and Toward Our Future

At PHA, you are the driver of change.

This week,
Pathlight editor Megan Mallory writes about Pathlight’s beginnings and where it’s headed. It’s an important conversation. Since I came to PHA in 1999, I have been told over and over again how important Pathlight is to our members. We do not take changes in this publication lightly.

As part of the PH community, you are an important part of the definition of
Pathlight’s future. Reading below, you will find a link to a survey that will help keep Pathlight a great value to you. Please take a few minutes to complete it and help define the future. As always, your much-appreciated participation makes all the difference!
___________________________________________________

Nearly 25 years ago, in May 1990, 50 copies of the first issue of Pathlight mailed to every PH patient the founders knew about, and to doctors and university hospitals. Since that time, Pathlight has grown from a four-page issue with a distribution of 50 to a 60-page issue with a distribution of approximately 10,000. The look has changed over the years, but the mission has remained the same: connect the PH community and provide stories of inspiration, hope and support.

Now in 2014, we are looking again to the PH community to help ensure that Pathlight remains strong and continues to reflect all the wonderful things that we do in our community of hope. Please take the Pathlight survey to help us keep Pathlight going strong. The survey takes approximately 10 minutes, and after August 10, it will no longer be available. So, please take the survey today!

If you take a look back at Pathlight over the years, you will see how much it has grown and changed, and yet, it remains the same in all the most important ways. For instance, the regular column “Ask a PH Specialist” began as “Dear Doctor” in that first issue in 1990, and “Passages” was known as “In Memory” and included three names. Every issue – from that first issue through today – is dedicated to the memory of PH patients who have gone before.

In the early 1990s, Teresa Knazik, one of PHA’s founders, served as the first Pathlight editor. Read our very first issue now.

Pathlight May 1990

Following Teresa's contributions as editor, Mark Taylor Murphy became the second Pathlight editor, Jan Travioli followed him as the third Pathlight editor, and Shirley Craig contributed her talents as the fourth Pathlight editor. Each of these individuals was a volunteer, contributing their time and their talents to making Pathlight as strong as possible.

From 2000-2006, under Shirley's guidance as editor, Pathlight became a 32-page publication, and it began printing in color. Read this issue of Pathlight from the fall of 2006.

Pathlight Fall 2006

Over the years, it became clear that Pathlight’s growth was creating a heavy burden for volunteer editors and, working with Shirley Craig, Pathlight editing became a staffed activity in early 2006. The clear mandate in moving from patient and caregiver editing was to make sure that the publication remained relevant to member needs.

PHA now coordinates the creation of Pathlight each quarter, and we try very hard to ensure that Pathlight always reflects the community’s voice. As a result of a community survey in 2007, Pathlight received a new look and updated content. Take a look at Pathlight from the summer of 2008.

Pathlight Summer 2008

Pathlight became a full-color publication in the summer of 2010 with all photos and graphics printing in color, and to celebrate its 24th birthday this past spring, Pathlight became available for the first time in an electronic version, easily accessible on computers, smartphones and tablets. Check out the last three issues of Pathlight now.

Winter, Spring and Summer 2014 issues of Pathlight

The name, Pathlight, was derived from the founders’ purpose. As the late Dorothy Olson, one of PHA’s founders, once said, “We wanted to find ways to light the way to awareness.”

As we look ahead to Pathlight’s future, we want this important publication to continue to light the way for many years to come. Help keep Pathlight going strong by taking our 2014 Pathlight survey and letting us know your thoughts on our community’s publication. The survey will not be available after Sunday, August 10, so please tell us your thoughts today!

If you have any questions or would like to contribute articles to Pathlight, please contact Megan Mallory, Pathlight’s current editor, at Print@PHAssociation.org or 301-565-3004 x754.

Monday, July 21, 2014

16 years...


Bonnie Dukart
Sixteen years ago, I was invited to meet Bonnie Dukart. We got together at a restaurant in a Marriott hotel just outside of Wilmington, Delaware. Bonnie chaired PHA’s Board at the time. She was the first PH patient I had ever met.

I was impressed.
Bonnie had a clear vision for PHA’s future. At the time, there were about 3,000 diagnosed patients in the U.S. – about a tenth of today’s number. She foresaw the need for the then small PHA to begin to develop greater patient and medical activities.
Two months later, I was invited to meet the Board. At the time, there was only one treatment for the disease. It was complex and very few doctors had developed the expertise to work with it. In that environment, wherever possible, patients sat on the Board with their caregivers.
During that first meeting, as decisions were being made, I heard words like, “I don’t know if this decision will help me, but I think it will help the next generation of patients. We should do it.”
It was clear I was in the presence of extraordinary people.
The strength and vision of that leadership has been changing the picture for PH patients ever since.
Of course, that leadership was not limited to those at that meeting.
It has been continuous before and since.
It includes the families who have helped PHA raise and commit more than $14,000,000 to research (so far). It includes the more than 300 support group leaders and co-leaders who are helping patients and families in their own communities, while building a strong national structure. It includes the nurses, pharmacists, respiratory therapists and social workers who organized and lead the PH Professional Network, enhancing professionalism in the field and developing educational materials for patients and families. It includes the doctors and researchers who have built PHA’s medical journal, educational programs and, now, medical center accreditation program to improve the quality of care for PH patients.


PHA's Board of Trustees meets during
PHA's 2014 International PH Conference and Scientific Sessions.
We have come a long way in the 16 years since that meeting. Survivability has extended with 11 more treatments, and quality of life continues to improve. Yet, we still have a long way to go. 
Like those early leaders, we walk that path together… with each of us doing what we can and what we must to change the future of this disease.
Here are five of the many ways you can get involved:

Wednesday, July 9, 2014

In the Field with Our PHamily

Supporting Those Who Chose to PHight Back through PHundraising 

This week, I invited Carl Hicks, PHA’s Executive VP to write about his recent travels across the U.S.  In a four day span, he participated in three events reaching from the East Coast, through the Midwest and on to the West Coast.  This is the story of a PH community fighting the good fight each and every day.  Thank you all for your part in changing the history of PH. --Rino

During the week following our most remarkable Conference (family reunion) ever, I had the opportunity to participate in three additional amazing events across the country. Conducted by pulmonary hypertension patients, their families, caregivers, committee members and others from our community, they demonstrated a degree of commitment and solidarity in our struggle against this disease that defies description. Nonetheless I would like to share with you just a few observations on this journey from coast to coast.


In less than 72 hours after returning from Indianapolis, I found myself on a northbound train for New York City. Exhausted as I was I knew that our own Chloe Temtchine and her family had to be even more so following their participation in Conference and her beautiful live performance of “Be Brave.” (www.chloetemtchine.com)  

Yet, they were about to host an event the likes of which I had only read about in the society pages of a newspaper. Chloe’s husband Marvin and her parents Jill and Richard wanted to reach an audience never before reached by PHA in order to create awareness and seek support for our struggle from the “movers and shakers” of high finance and the fashion industry in the city.

The stunning venue was atop a rooftop terrace of a luxury high-rise in Manhattan at sunset and catered by a chef who had lost her mother to PH. The guest list of the invitation only event included folks like Isabelle Donola, a visionary fashion designer, Sports Illustrated swimsuit model Donna Ferguson, and Shad Azimi, called the “King of Private Equity” by some. But, the list also included our Gina Parziale and her Greater New York and Philadelphia Chapter team who, while F. Stokes, noted spoken word and rap artist took the stage, fanned out to “work” the crowd and educate all about PHA and make in-person invitations to our upcoming gala. 





By the time Chloe herself took the stage to perform the most stunning rendition yet of “Be Brave,” all had heard of PH and commitments to sponsor high-dollar tables at the gala were being made. Marvin and Chloe have made the commitment to raise $500,000 this year alone for the fight against PH. Their event on that magical New York evening in Manhattan surely put them well on their way!

Up at 3:30 a.m. the next morning, I was again in motion, this time to Cleveland, Ohio, to pick up a rental car and drive 72 miles to Girard, Ohio, where preparation was underway for the 2nd Annual Nicole’sPHriends Golf Tournament.

Nicole is a beautiful young mother of two who was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) “out of the blue” a little over two years ago. She is also the scrappiest, most feisty little ball of energy I think I have ever met. She has mobilized (electrified) her community in her fight against PH, and they turned out in the hundreds with love and commitment to support her. I was really taken by this group in northeastern Ohio (my home state) and their dedication.



Nicole was everywhere at once (“I don’t know how to delegate” she confided), and an army of volunteers prepared for the thirty-six foursomes scheduled to participate. It was a fun group, with costumes, purple mohawks and tattoos disparaging PH in ways I cannot print! I learned for the first time that PHA has its own race (sprint) car that races across Ohio and Pennsylvania in order to spread awareness about the disease. Painted in large purple letters on the side “PHenomenal Hope” and “Cure PH,” the car had won the night before in racing at a track in front of thousands. Interviewing the driver, Jimmy Morris, he was instantly clear about his role. “Sir, my mission with my racecar is to raise awareness so we can stop this terrible disease,” he exclaimed. I had no idea this was going on.



The morning dawned beautiful in Ohio for Nicole’s event, and at the end of the day, Nicole had achieved her goal of breaking last year’s record, raising $35,000 for the struggle.

The next morning at 4:00 a.m., I was enroute to Orange County and Betty Lou Wojo’s “7th Annual Swing 4 The Cure Wojo Golf Classic.” After losing two of her boys and her husband to familial PH Betty Lou vowed to never give up the fight, and she hasn’t. A long serving member on PHA’s Board of Trustees, Betty Lou has been a tireless, highly inspirational warrior in our struggle. She too has mobilized her community and many have attended all seven outings, always contributing while having fun on the course. In the aggregate she has raised hundreds of thousands of dollars for the struggle and this year added significantly to the total by NETTING $50,000.





I don’t play when I attend these events. Spending time instead with our PHamily, our patients and caregivers in the community is what I prefer to do. Seeing Ornah Levy, Michelle Figueras, Noelle Holly, Shasi Sahgal and others is what I seek. Without even knowing it, they nourish and strengthen me so that I can stand up and do my part.

My part at each of these events is to stand up and tell the community about what PHA has done and is doing for our PHamily, and it is a part that I relish. Educating all about the value proposition of this organization that I so love to be a part of is clearly the best part of my job. Not everyone knows that thanks in part or whole to PHA that while we only had 100 or so physicians treating PH in 2001 we now have closer to 10,000. Or, that in some cases these doctors are only seeing one or two patients a year so there is a serious need for medical education that PHA delivers through 5 different medical education programs that meet over 60 times a year in addition to our PHA Online University. Together PHA’s programs served nearly 112,000 people last year who wanted to further their knowledge about PH. Publishing our medical journal Advances in Pulmonary Hypertension, to the tune of 40,000 copies every quarter, furthers that education effort around the world.

We all know our highest mission is finding the cure for PH, but not everyone knows that PHA funds and administers five separate research programs to include the world’s only pediatric research fund and that over $14 million in research commitments have been made since 2001. Until we find the cure, increasing the quality and length of life is next for us at PHA, and I am so proud to be able to report that even though there were zero (0) FDA approved therapies for PH in 1994, now there are 12 with more on the horizon.

Patient outcomes are always better at medical centers that pull together all of the assets needed to combat this disease. Accordingly, PHA has undertaken a mission at our physicians' requests to certify over 126 PH Care Centers by 2016. Knowing that support for one another out in our communities leads to better outcomes as well, PHA now supports over 245 support groups nationwide led by over 300 of the finest people in our PHamily. Overall, they meet more than 600 times a year.

Ultimately to be as successful as we must be, we must create greater awareness about PH. Thanks to PHA in the last month more than 2,100 NYC taxicabs carried PHA’s public service announcements live on the screens facing the passengers. This led to more than 563,000 plays in only two weeks and 845,000 impressions. Not stopping there our PSAs have been supplied to over 4,000 television stations and have been seen on American Idol among other top-ranked shows. They can also be heard on greater than 9,000 radio stations.

I could go on and on but perhaps the numbers I am most proud of are these. For the past 11 years straight, our PHA has been awarded the absolute highest rating possible, 4 Stars by the independent non-profit evaluator, Charity Navigator. This places PHA in the elite of the elite of nonprofits among less than 1% of the thousands and thousands of charities evaluated annually. Indeed, PHighting back through PHundrasing is an activity that I can fully espouse and it will always get my support. See www.PHAssociation.org/Fundraise.


Everywhere I carry this message I am greeted by the pride of our community that is so clearly earned and justified. It is a pride in the only organization that works directly for each of us affected by this disease, 24/7.

Your Pulmonary Hypertension Association

Wednesday, June 25, 2014

We had a meeting and it was good...



Conference 2014 Program book
Over the years, PHA's International PH Conference and Scientific Sessions has become the largest PH meeting in the world. In it's structure, it is also the most unique.

Here are some of the preliminary numbers from PHA's eleventh Conference, which ended on Sunday, June 22.

* 1,575 registrants
* 315 participants in 9 distinct research projects
* Participation from 30 nations
* Attendance from PH association leadership in 26 nations
* More than 175 medical professionals participating in 58 sessions
* 155 support group leaders participating in support leader networking and training session
* 365 medical professionals participating in Scientific Sessions
* 14 on-site support groups

Conference is about a lot more than the numbers, though. It's about connection and heart.

Cathy McLeod, a support group leader in Massachusetts gives us a picture of how one observer saw Conference. She writes:

I wanted to share a conversation I had with one of the concierges at the hotel. He told me that we were the largest group he has seen since he worked at the hotel. He said he was so impressed with how bonded and close we all were. When I told him that most of us had not met each other before this conference, he was shocked. He said you all greeted each other like long lost friends. I said, well now we will all be lifelong friends, Then I gave him the low down on PH. He was amazed. He also said PHA was a great organization to work with.
I think that's a pretty good picture of what Conference achieves. Another picture can be found on Colleen Brunetti's blog, The New Normal or the many, many comments on PHA's Facebook page.

Over the years, PHA's International PH Conference has become a complex and layered meeting. Having so much tailored for so many different interests means that no one can see it all. Having said that, here is my day-by-day perspective.

Three hours after arriving in Indianapolis on Wednesday, June 18, I joined PHA's Board of Trustees in hosting a dinner for about 50 leaders of PH associations from five continents. As various leaders spoke about their issues and accomplishments, I was struck by the similarities and solidarity that I saw. Having grown from three PH associations in 2000 to 68 today, we are truly becoming a global movement. As Huanghuan, a young woman who leads the Chinese PH association ISEEK with I Rong, spoke about the access to treatment issues they face, I could see the heads of many Latin American leaders nodding agreement.

The next morning, Thursday, was still pre-Conference but that didn't meant there wasn't a lot going on. We began with the Board meeting at 8 a.m. and the Global Leaders Summit (for PH association  leaders around the world) at 9 a.m. Both were all day meetings with a lot to do. Since my Board presentation and my opening talk at the Leaders' Summit were scheduled within 15 minutes of each other, I was nervous about the timing. Fortunately the two meetings were next door to each other and it all worked out (with Debbie standing in the doorway of the Board meeting where I was presenting, waving occasional updates on when the international meeting was ready to start).

PHA's Board discussed many important issues, including approval of a registry that we all believe will create great value and knowledge for the improvement of PH treatment.


Since many of the international PH association leaders from Latin America spoke limited or no English, much of the Summit was held as breakout sessions where people could speak in their own language with report-outs being delivered in English and Spanish. We were fortunate that besides the North Americans, Australians and New Zealanders, all the Asians, Europeans and Africans spoke English. The productive sharing of best practices and goals led to a number of follow up meetings during the course of Conference.

Shortly after the Board and international meetings ended, pre-Conference activities began. PH Clinicians and Researchers, an 800 member physicians section within PHA held a reception in the poster hall where 99 posters were already up. 

Around the same time, Patient and Family Meet-and-Greet began, as did the PH Professional Network (PHA's 1,400 member section for nurses, pharmacists, respiratory therapists and other non-MD medical professionals) dinner. PHA Europe also hosted a dinner for our international guests.


Many people left these events early because after PHA learned that Team PHenomenal Hope would be an hour away in their non-stop Race Across America, we sent two buses filled with Conference attendees to intersect with them during a late evening bike change in Bloomington, Ind.

Because PHA's Conferences are so unusual in blending patients, family members and medical professionals, it was interesting to see the coding in the program book which helped registrants understand which sessions had the most value for them. This was particularly important as Conference officially began on Friday.

The first element to begin was the Scientific Sessions which ran from 7 a.m. to 5:30 p.m. As this was underway, more Patient and Caregiver Meet-ups and the Support Group Leaders Networking Luncheon got underway.

Titled Going All Out in the Race Toward a Cure, the Conference opening session at 1 p.m. was amazing. We began with a video in which Team PHenomenal Hope spoke about why they were racing in 9 days from Oceanside, Calif., to Annapolis, Md., even as the video played. It was for patients, for PH awareness and to support the work of PHA. From there, we went to our keynote speaker Jeannette Morrill. Jeannette has survived with PH for more than 35 years. She spoke honestly about her ups and downs and the isolation she felt during the first 21 years after her diagnosis... a period during which she never met another patient. She went on to speak about her own connection to PHA and evolution to activist in the fight against PH. 


As Jeannette completed her talk, the stage went dark and then re-lit with Chloe Temtchine and her band playing and singing her now iconic Be Brave, next to her oxygen tank, which she has named Steve Martin. 



Our goal with opening is always to set the positive and enthusiastic tone for Conference. Dr. Patty George and Team PHenomenal Hope, Jeannette Morrill and Chloe Temtchine did that... and they did it beautifully.

From there, our 2014 Conference began racing forward. Patient and Family Led Sessions, Skill-Building Workshops, Support Group Leaders Training, Teen and Long-Term Survivor Mixers and Generation Hope all came together while our medical journal (Advances in PH) editorial group met to plan upcoming issues. The Advances group wasn't alone in having a side meeting, so did our Specialty Pharmacy Advisory Board, Canadian attendees and Latin American attendees, and Early Diagnosis Campaign committees, among others. Various receptions were also held... the Chair's Reception, the International Reception, the Junior Faculty Reception and more. Our Outstanding Physician awardee, Dr. Murali Chakinala, presented on the evolution of an idea to improve quality of care in PH to the now launched PH care centers accreditation program. It is an exciting and important step forward for the PH community.

On Saturday, as always, a real highlight was the "Journeys" Luncheon.  When it was conceived for the first Conference in 1994, the idea was to break down the barriers between doctor and patient. Today, with those barriers gone or certainly reduced, the goal is to reinforce the powerful relationships in the PH community.

At dinner, we focused on building for the future. In a presentation titled, The Power of One and a Half Men, I had the privilege to speak about Steve Van Wormer and his 11 year-old son Lucas' creation of a media campaign. It's a campaign that, if we had to pay for it, would have cost millions of dollars...not the less than $25,000 we have investedSteve has gotten the public service announcements (PSA's) he has created for PHA accepted by networks that reach hundreds of millions of viewers. Our next step is to call 11,000 TV and radio stations to get them to actually play the PSAs. It's an extraordinary opportunity. When I asked for 110 in our audience to join our 110 for 10 for 10 campaign (110 callers committed to making 10 calls per month for 10 months), we had 371 responses. Once again, we are converting the power of one to the power of many. Our Executive VP at PHA, Carl Hicks, followed with a PHA by the Numbers presentation that I am sure we will be using quite a bit in the future. It very simply laid out the many things the organization is doing in the fight against PH. We concluded the evening with our incoming Scientific Leadership Council Chair, Dr. Karen Fagan speaking on our value, vision and future.

Following dinner, 40 international leaders came together to plan joint committees to bring the global fight against PH into a new era of coordination. They held another four hour session following the close of Conference on Sunday. In the next room our four PH Care Centers committees held their own joint committee meeting.

So I haven't spoken about the breakout sessions. I haven't spoken about the Kids' Room program and Field trip. I haven't spoken about the breakfast sessions -  Meet the Medical Professional and Diane Ramirez' amazing talk. I haven't let you know about our very special awardees and what they accomplished. And I haven't told you about a whole lot more.

Most importantly, I really haven't given you any but one of the 1,575 stories that really describe why this meeting has so much meaning.  As I close, here is one story that answers the question, "why does PHA put so much effort into Conference?":

Trying to come up with a way to try and explain the experience we all had. I don't think I'll ever be able to truly explain what it did for our family, but I will try my best:

For the first time in almost 11 years I saw a different side of Eliana.

Yes, she is always happy, but there was a different joy beaming from her this weekend.

Maybe it was because she didn't have to explain why she needs a scooter, or why even though "she looks so good" she needs a break after so many minutes.

She didn't have to explain why she wears a special dry suit to swim (and finally swam in a pool full of kids with dry suits) or why she needed oxygen halfway through swimming.

I saw her PROUDLY show others her pump instead of being embarrassed.

She never got embarrassed when I reminded her to slow down, or come take her meds.

And the more I think about it, I think this trip made her even happier than her Make-A-Wish trip!

She's not the only one who benefited, I watched Jake finally get to talk with other PH dad's and build an incredible bond with them. He doesn't open up much about Eliana because, in his words, "they don't understand".

Eliyah made friends with some very amazing teens who have PH just like her sister. She didn't have to explain to them why her sister rides a scooter or wears oxygen and had an understanding and compassion for them because she knows what they go through on a daily basis. Several times I heard her ask them if they "needed a break" or ask "are you ok?".

Israel never has a problem making friends, but he made many at the conference as well and tried hard to keep things mellow while playing with the little PHers so they wouldn't get too tired or breathe too hard.

For me it was an amazing experience to finally get to hug all the moms and their children who's stories I have followed for years. I've shed years over these kids on many occasions and my heart has ached right alongside the hearts of their mothers. They are all so strong and courageous to me.

Eliana felt like a superstar all weekend, as she should and I think for once PH didn't feel like such a bad thing because as ugly as a disease it is, we have truly gained a PHamily and a bond that can never be broken.

The Alderete family misses you all already and can't wait for Dallas in 2016! Until then keep PHighting! And speaking of PHighting, I forgot to mention earlier, the star on her conference badge stands for LONG TERM SURVIVOR! Another very proud moment for all of us.

So, that's why we do Conference.  We'll see you at our 2016 Conference in Dallas! 

In the meantime, watch for postings over the next few months of most Conference sessions
in PHA Classroom.


Wednesday, June 11, 2014

The International Reach of the PH Cause

The fight against PH is a global effort… and one that is growing rapidly. The goal is for no one to be left behind in the march toward better treatments, treatment accessibility and, ultimately, a cure. In recent blogs, I wrote about PHA's participation at the Saudi PH Association (SAPH) conference in Oman and our visit to ISEEK, the patient association in China. As an update, we've heard that several cities in China, following the Beijing meeting we participated in, have approved treatments for PH. We are also moving forward on our agreement with Saudi Arabian PH physicians to help them build patient participation into their next East Mediterranean Region Conference. It's nice to see that SAPH has included various PHA resources prominently on their homepage. As we prepare for our 2014 International Conference next week in Indianapolis, we are looking forward to seeing our friends from throughout the U.S. and also our friends from more than 30 nations around the world.

With this blog, PHA Medical Services staffer, Briana Rivas-Morello, concludes the story of PHA's World PH Day (and week!) travels. Here are her observations.

Briana presents to conference attendees.
On April 29, 2014, the Sociedad Latina de Hipertensión Pulmonar (HP) hosted an educational program, Día Mundial de la Hipertensión Pulmonar 2014, in Medellín, Colombia. I was excited for the opportunity to represent PHA at this meeting. The Sociedad Latina de HP, an umbrella organization that brings together the Latin American PH organizations, hosted this meeting for World PH Day (May 5), which provides the opportunity for PH associations around the world to act as one collaborative force against PH. In this way, across the globe, we took one step forward in worldwide PH awareness.

Sociedad Latina de HP consists of representation by 16 Spanish-speaking organizations in Latin America and Europe. The Día Mundial de la Hipertensión Pulmonar event brought together patients, family members and medical professionals to network, learn from each other and, most importantly, become more empowered to fight the disease. It was fascinating to watch presentations ranging from basic PH diagnosis and management, to the complex psychosocial issues that patients may face and the best coping strategies for living with PH. In presentation after presentation, I watched patients and caregivers engage and truly empower themselves in their fight against the disease.

PHA in particular was invited to present on how to organize patient support groups and maximize community involvement. In the past decades, the PH community has grown tremendously, and this is no exception in the Latin American community. As these groups continue to increase in numbers and capacity, they are facing new challenges. Most groups, as PHA did a few decades ago, originated as patient support groups, organized by and for patients. As they grow, Latin American groups are now beginning to grapple with such questions as:
  • In what ways can medical professionals become more involved?
  • In what ways might government or health ministry officials become more involved?
  • What can family members and friends do to help?
These questions were the ones I tried to answer throughout my presentation, by providing examples of how PHA has been able to involve medical professionals, political representatives and family members and friends into our mission. The most important message that I hoped attendees would take home was that there is no loss in asking. It seems as though there is a slight hesitation to ask medical professionals or health officials to become more involved, as they already give so much of their time to the community. But as I asked the attendees to look around, and see how many medical professionals (many of whom work closely with PHA!), family members and friends were in the room, it was clear that there are countless individuals willing to help patient groups; they just need to be provided with the opportunity to do so.

Migdalia Denis, the president of Sociedad Latina de HP,
presents Dr. Sandoval with his award.
In this way, Sociedad Latina de HP organizations are working together to answer the above questions and begin to build toward their mission to offer hope, support and education to patients with PH and to advocate on their behalf. At PHA, we feel honored to be included in this process.

While in Colombia, I was especially excited to see Dr. Julio Sandoval receive the first Sociedad Latina de HP medical excellence award. Dr. Sandoval, of the Instituto Nacional de Cardiología in Mexico, is a longtime partner of PHA, and it was an absolute privilege to see him win the award. As I watched him receive the plaque, I couldn't help but reflect that it was an absolute and tangible representation of what World PH Day is - unity and collaboration in the fight against PH. We are all working together, in all ways that we can, involving as many players as we can.

PHA is extremely excited to continue to partner with the Sociedad Latina de HP to provide support and education to all those living with PH. This partnership is particularly important as PHA continues to develop its Spanish educational content. At the end of 2013, PHA hosted its first Spanish webinar on www.PHAssociation.org/SalonDeClases, and the second Spanish webinar just about one month ago. I was able to share this event with attendees at the meeting and receive feedback on our Spanish programming which will better help us reach more patients' needs.

Briana (left) and Yanira Polonia, a support group leader for the
Dominican Republic group, visit a famous statue while
traveling in Colombia for the conference.
To add to my excitement, I recently learned that more than half of the participants coming to the International Leaders' Summit at PHA's 2014 International PH Conference and Scientific Sessions will be representing countries in Latin America. I look forward to reconnecting with friends made at the Día Mundial de la Hipertensión Pulmonar and meeting many new friends! In persisting to strengthen these global partnerships critical in the fight against PH, I hope that we'll truly progress to the day we may find a cure.

Tuesday, May 27, 2014

Around the world in 30 days ... and still going!

As I write this note, three weeks and three days from PHA’s 2014 International PH Conference and Scientific Sessions, I find myself thinking about what Conference years were and what they are now.

It used to be that in even-numbered years (Conference years), volunteers and staff were completely re-directed to manage the thousands of details that make for a successful Conference.

That was then. Today is different.

We are working on so many essential projects beyond Conference that the good of the community requires us to strive for excellence in all.

Here is a snapshot of the 30 days (April 27 to May 26) before I wrote this blog. I hope it will give you a picture of what is being done to accelerate the fight against PH.

PHA opened this 30-day period with news that we had received another four-star rating by Charity Navigator. This is the eleventh time PHA has been rated by the largest online nonprofit reviewer and the eleventh four-star rating they have given this organization. They tell us less that 1 percent of the thousands of charities they rate have received this honor.

As many of you know, one of our goals at PHA is to weave together patients, families and medical professionals across the globe to make sure no good idea is kept in shadows. That concept of cooperation and collaboration has led to the growth of national PH associations with 68 functioning today, up from three in 2000. On May 14, in the context of World PH Day, I blogged about our weeklong trip to Muscat, Oman, and Beijing, China (April 29 – May 6). During that same time, we participated in a Latin America-wide conference of PH leaders. These trips are about much more than visits. They are about strengthening global unity in the fight against PH. For example, one day before the Oman/China trip, we had an April 27 international conference call to agree on the creation of a website that will help PH association leaders more easily find and use resources from all of the PH associations … bringing us one step closer to universally shared best practices for the acceleration of the movement’s growth. This call was an outgrowth of two years of meetings that also resulted in the creation of coordinated PH anxiety and depression studies in Asia, Europe and the U.S.

While I was working with our Chinese PH partners, marking World PH Day on May 5, there was tremendous activity in North America. PHA continues to manage the World PH Day website, which we created last year. Thanks to our friends at PHA Canada, Niagara Falls was lit purple on May 5 in recognition of World PH Day, as were the Peace bridge between Buffalo, New York, and Fort Erie, Ontario, and the CN Tower in Toronto (among other notable sites). In the U.S., besides a number of events, we continued to focus on building PHA’s media blitz, which I blogged about on April 30.

PHA’s media campaign continued to grow rapidly throughout May, with Queen Latifah, Michael Buble, Florence Henderson, (see May 2 entries about Lucas), Laura Dern, Courtney Cox and Diane Ladd helping to get the word out. Reports kept coming in all month about networks playing our public service announcements (PSAs), including in prime time on American Idol. New networks (both English and Spanish) were added to the list agreeing to play our PSAs. Our web pages training those in our community on how to maximize local air play are being visited heavily … as are the web pages for those who are becoming aware of PH by seeing the PSAs on TV or hearing them on the radio.

We spent May refining our formula for success in getting TV and radio play. According to the Benton Foundation, there are 1,744 full-power TV stations in the U.S. Adding low-power and UHF and VHF commercial stations, the number grows to 5,720. There are 14,728 full-power radio stations in the U.S. This month, we had our PSAs sent to the inbox of 4,000 TV stations and the 10,000 most popular radio stations. Through a few easy-to-make phone calls, you can make sure those PSAs are opened by the stations and played. We have never had an opportunity for awareness like this before and, as always, success depends on you and those you can help recruit. You are our only chance to reach in to the community where you live!

On May 8, three of us met PHA co-founders (and sisters) Judy Simpson and Pat Paton at the National Organization for Rare Disorders Gala in Washington, D.C. Pat and Judy (pictured left) were being honored as part of NORD’s Portraits of Courage program. Actelion and Bayer had been selected by NORD for their Innovative Orphan Products Award, with Pat Paton making the presentation to Bayer and me to Actelion.

On May 14, we filled the room at the FDA/PAH patient meeting at FDA headquarters in White Oak, Md. It was a great discussion with the goal of including patient input in the FDA decision-making process. Meetings for only 16 diseases have been scheduled despite requests from hundreds of disease organizations. We feel fortunate to have been able to help make this meeting take place. The webcast of the hearing has already been posted from the FDA PAH Public Hearing page in Part 1 and Part 2.

As we move closer to the launch of PHA’s PH Care Centers accreditation program, the pace of review and final development is accelerating. During the week of May 12, we had four PHCC Committee meetings to discuss the six pilot accreditations that have recently taken place, make necessary adjustments and prepare for the upcoming launch. Much education about the program has already taken place and more is coming.

Between May 16 and 20 – with several other staff – I was at the American Thoracic Society meeting in San Diego. This is the annual meeting attended by more than 16, 000 pulmonologists. When I attended my first ATS meeting in 1999, there was very little about PH … two sessions with attendance at one being 35, the other 50. Now it is one of the most discussed issues at the Conference, with thousands participating in PH sessions.

While at ATS, we had the opportunity to host a three-hour question-and-answer session for patients and their families. Drs. Ron Oudiz, Nick Kim, Jeff Sager and Nurse Practitioner Wendy Hill delivered a great interactive program. PHA’s exhibit was heavily visited with a great deal of interest in both our medical journal – Advances in Pulmonary Hypertension – and the new PH Care Centers accreditation program. Each of us had a number of other responsibilities at the Conference. With PHA's Michael Gray and Briana Rivas-Morello involved in a number of medical committee meetings (Briana also had primary responsibility for the patient question-and-answer program). PHA's Jessica Armstrong held committee meetings and developed new connections for our Early Diagnosis Campaign. She returned with several endorsements and several more pending. Debbie Castro’s schedule was filled as the newly elected Chair-elect of ATS’ Patient Advisory Roundtable (PAR). In two years when she becomes PAR Chair, Debbie will have a seat on the ATS Board. Dr. John Newman, a former PHA Scientific Leadership Council Chair, received the ATS Educator Award. Dr. Val McLaughlin, our current Board Chair received the PAR Award for Excellence – the second time in two years that it has been presented to a PH physician. (Dr. Mike McGoon received the award last year.)

Also, while at the American Thoracic Conference, we learned that we are ATS’ largest research partner … larger than industry or other nonprofits. This speaks to our goal of and success at leveraging our donor’s research support to bring in additional money to support PH research.

There’s something else special about the ATS Conference. Coming as it does every second year a month before PHA’s Conference, it is a time when we are usually discussing options for our Conference’s room blocks, remaining scholarship availability and many other issues. This year was no exception but, fortunately, did not distract too badly from my various meetings with funders, physicians and nonprofit partners. It is a place where we get to connect the dots to accelerate our forward motion.

So, that is a sketch of the past 30 days through one PHA staffer’s experiences. It doesn’t include those of our other employees and volunteers both in the national office and in our Chapter offices. It doesn’t include the glue that keeps our structure together and well governed, monthly meetings with PHA’s executive committee and finance committee, among others. It doesn’t include the time invested by staff and volunteers in support groups, the development and management of our research programs, our advocacy activities, patient and medical education, the creation of a new feedback system related to specialty pharmacies … and a great deal more.

We are truly a busy organization. For those who understand the importance of what we do, for those who can handle the pace, we wouldn’t have it any other way.

Wednesday, May 14, 2014

World PH Day: Pieces of a Brilliant Mosaic

As I've watched it grow and evolve over the past 16 years, I've come to see it as a beautiful mosaic. The power of that beauty flows from people who unite around the common cause of fighting this disease.

First, in 1991, four women sat around a kitchen table in Florida in the United States. Their desire to ease the isolation of living with a disease that was both rare and without treatments drove them to form the first pulmonary hypertension organization in the world, the Pulmonary Hypertension Association.

In 1996, patient associations were organized in France and Germany. 

In 2000, at PHA's International PH Conference in Chicago, we realized that people from other nations had actually come. When we invited them to meet with PHA's Board of Trustees, seven people joined us to begin a conversation that has never stopped. By 2001, PHA-UK and PHA Israel had formed.

When we had a more intentional meeting at our 2002 International Conference, 80 people came. When we asked them what they wanted from us, the message was clear.: PHA has been around longer. Help us to learn. Help us to build.

More national organizations were formed, and by the 2004 Conference, we had staffed a position to help increase communication and collaboration among the patient organizations. We also shared a simple principle that has been adopted by all PH associations: to succeed, we have to stand together – not just patients, not just caregivers, not just researchers, not just medical professionals... but ALL of us.

So now, as we prepare for PHA's 2014 International PH Conference, it remains the same. It has always been equal parts patients, family members and medical professionals. It has always been and will always be homecoming for the PH community

It has also become something more. It is the International Conference and Scientific Sessions. It is the International Conference and Global Leaders Symposium. More than 30 nations are expected to have a presence.

They are part of a global movement that today includes 68 national PH associations.

When our friends in Spain proposed World PH Day three years ago, we were glad to help. Since the Second World PH Day last year, we created and have managed a website for all the associations to share and coordinate activities.

We are also often invited to participate in other World PH Day activities.

This year Julia, who coordinates our international activities, and I were the guests of the Saudi Association for Pulmonary Hypertension. We boarded the plane on April 29 for a 13-hour flight to Muscat, Oman. For seven years, this group of physicians has led the Joint Pulmonary Hypertension Association Assembly of the Eastern Mediterranean Region. As she has with other national organizations, Julia has worked with PHA staff to make our patient and other materials available for translation by SAPH. Last year, she helped organize a call between U.S. and Saudi patients. 

Our visit was a great opportunity for us to meet physicians from throughout the Middle East and share information and discuss possible partnerships. One important conversation is likely to lead to a patient component for the next conference. When we helped Dr. Nick Hill organize a patients component for his medical Symposium at Tufts in Boston more than 10 years ago, we saw that concept spread rapidly to other PH meetings throughout the U.S.  Today it is the rule, not the exception. Our hope is that if Dr. Majdy Idrees and his SAPH leadership group are successful, the concept will spread throughout the region.

After three days on the ground in Muscat, Oman (a beautiful city by the Indian Ocean), it was time to hit the airport. Julia headed back to Washington, D.C., and I headed to a different gate for a nine-hour flight to Beijing, China. (I'm writing this as I wait for a lift to the airport for my trip home.)

ISEEK, the patients’ group in China has been working hard to meet needs in their nation. I had been invited to come to their first Conference. They had brought together more than 150 patients, family members and doctors with government officials to discuss the importance of creating drug availability for PH patients. I was brought in to discuss the multi-part U.S. insurance system (private insurance, Medicare, Medicaid, the Affordable Care Act, pharmaceutical support programs and so on). While there, I had a chance to renew acquaintances with Dr. Cheng, who I had met seven years ago during my last trip. Huan Huang, a young woman who was transplanted two years ago and is now the Director at ISEEK, presented on patient depression issues. It was striking to see the similarities and differences from our own and PHA Europe's depression and anxiety study to this Chinese study.

Following the meeting, about 30 doctors held an open meeting, with press attending, where they discussed positive ways to achieve the same thing every patient group in the world is after: a better life for patients as we continue the march toward a cure. It was good to see the doctors and patient leaders working so well together.

I spent most of the next day with the ISEEK staff. Their executive director, Rong Li, formerly a filmmaker, has built the organization quickly in a country now beginning to accept the value of nonprofits. They remind me so much of PHA's days of early staff history. They have moved four times in the past three years of their existence. Their staff has grown to six. They hire for the same values we do: bright people with commitment to cause and an ability to work well in teams. And they have a refusal to fail.

While Julia and I were traveling, Briana was in Medellin, Colombia, where PHA had been invited to present at the Sociedad Latina de Hipertensión Pulmonar (Latin Society of PH) an umbrella organization similar in structure to PHA Europe. Briana's report will come in a future guest blog.

So, as I wait for my ride to Beijing airport for the long ride home, I continue to catch up with the regular daily and sometimes hourly updates about PHA's World PH Day project, which has generated celebrity interest on Twitter and continues to expand TV and radio play for our public service announcements.

Every day another piece of the mosaic falls into place. Every day we move another step closer to our goal.

It was wonderful to spend time with this enthusiastic and inquisitive group. I know we will hear a lot from them in coming years.