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, 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.