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 invested. Steve 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.

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.

Leadership, Face to Face...

I had an interesting call from Sean Wyman the other day. Sean is an energetic young man who is active in our community, a patient who is currently attending medical school.

As we spoke about a number of issues, we got onto the subject of PHA’s recent Board meeting. Sean found it interesting and suggested I share it with the broader community. Thanks for a good idea, Sean.

"When you can get these leaders together, face to face, that’s when you’ll see real change."
– Bruce Brundage, MD (2001)
Chair of PHA’s Scientific Leadership Council (SLC)

When we talk about a Board meeting at PHA, we’re really talking about a lot more.

Our most recent set of meetings offers a good example.

On Wednesday, March 12, I flew to Orlando and headed over to the Marriott Renaissance. After checking sites in Florida and Texas, our staff picked this venue because the hotel had the meeting room availability we needed for our various sessions and activities, airfare is cheaper because there are so many direct flights, and we were able to get a great room price.

For more fluid planning, PHA usually holds our leadership meetings back to back, since our Board, SLC and PH Professional Network (PHPN) structures are interlocked. Plus, holding them together keeps costs down. This time was no exception.

We began with the executive committee of PH Professional Network on Thursday morning at 7:30 a.m. This is leadership of PHA’s membership group for nurses, nurse practitioners, physicians’ assistants, pharmacists, respiratory therapists and other non-MD medical professionals. Much of their conversation is always about different projects they are creating or reviewing for patients and families. (Take a look at our new School Resource Guide for an example.) There was also a lot of conversation at this meeting about the restructuring of their membership newsletter, development of online medical education programs for their peers working in PH and their members’ involvement in supporting our International PH Conference.

 

When they broke at about 4:00 p.m., I headed over to a combined meeting of the four leadership committees of the PH Care Centers (PHCC). This effort to create an accreditation system for PH Centers is important for a number of reasons.  

• PHA has always publically proclaimed that it is important for patients to see physicians who are experts in PH. However, when people contact us, we have no standard by which to make referrals.
• PH has grown from about 100 treating physicians in 2001 to more than 10,000 today. Most of those physicians see two or three PH patients and are not attached to the latest research in this fast-moving field.
• About three years ago, one of the nation’s largest insurers put out notice that they would no longer be covering combination therapy for PH patients in North Carolina and that this was the pilot for that policy being spread across the U.S. As this limitation on access to treatment moved toward reality, PH doctors were frightened for their patients. PHA’s Scientific Leadership Council (SLC) joined with PH Centers in that state to begin conversations. They made a case for the insurer to defer their decision. They also learned that a major concern for the insurer was that many PH patients had been diagnosed without the essential right heart catheterization, and they claimed to have no objection to providing approval for combination therapy where the prescribing physician was expert in the field. The only problem is that there were no expert standards in the field.

The committees of doctors, other medical professionals and patient liaisons were reviewing current progress and next steps. The PHCC program is now in the midst of its pilot phase (six accreditations), and medical leaders will be holding a webinar on April 30 to explain the program to patients and caregivers. It was a productive and intense meeting that went on until 10:30 p.m.

The next morning, Friday, at 8:00 a.m., it was time for PHA’s SLC to begin. The SLC is a body of world-class PH physicians who – among other things – help PHA develop strong medical education activities for medical professionals, patients and families, oversee our various research programs and make sure that all of our medical information is correct.

Discussions were held around the work of a number of active SLC committees. The Insurance and Advocacy Committee (chaired by Dr. Ron Oudiz) works on making it easier for PH patients to get approval for Social Security Disability and coordinates various state efforts where the voice of medical professionals is needed to increase the value of these programs for PH patients. The Research Committee (chaired by Dr. Serpil Erzurum) reported on an upcoming review of our research programs, which have, to date, committed more than $13,000,000 to research grants. The Education Committee (chaired by Dr. Bob Schilz) has been working on fact sheets for the three new treatments approved for PH by the FDA. All three of those new treatments came in a 73-day period between October and December of 2013. 

With 12 treatments now available – all since 1996, 11 since 2001 – PAH has as many or more treatments than all but two of the 7,000 rare diseases identified in the U.S. The FDA has told us that, unless you count all the cancers as a single disease, they have never seen so many treatments approved in so short a time for any disease, rare or common. This speaks to the collaborative work of our PH medical community and the power of working in a community that does not separate medical professionals, patients and families. We may be a rare disease with a rare model of operation, but PHA’s approach certainly is working.

The other SLC committees also moved forward on many fronts. I was touched that so many of the SLC members donated their travel expenses in honor of Dr. Richard Channick, who is completing a very productive term as SLC Chair. The suggestion had been made by his successor, Dr. Karen Fagan. The SLC meeting went on through mid-afternoon, but I had to leave at 2:00 p.m. as PHA Board Committees began their sessions.

PHA’s Development Committee was first up, followed by the Strategic Planning Committee and the Governance Committee and, finally, the Conference Committee. So what do these folks do?

I think the most succinct description I’ve ever heard of the job of a development committee came from a nun who was president of a non-profit hospital in Rochester, Minn. She said to Dr. Mike McGoon, “No money, no mission.” It’s true. Unlike government, organizations like PHA don’t get money through the power of taxation; unlike businesses, we don’t have a product to sell. We keep our doors open to do the things we are asked to do because people vote with their pocketbook. PHA’s basic dues have remained at $15 per year for well over a decade and a half, and while our membership numbers have grown considerably, if every patient in the U.S. joined PHA, dues would only bring in about 3 percent of our budget. Our Board throughout the years has directed us to build a structure that will not be limited by our numbers. After all, it is just as expensive to fix a rare disease like PH with 20,000 to 30,000 patients in the U.S., as it is to fix a more common one like diabetes with 26,000,000. So the Development Committee works with staff to make sure our fight is never limited by the size of our disease.

The Strategic Planning Committee has similar simplicity to its mission. If you haven’t decided where you want to go, you’ll never get there. PHA’s Strategic Planning Committee works with staff and stakeholders (various segments of the community we serve) to plan our future directions and evaluate whether we are progressing toward those targets. Our plans are usually developed for three-year time periods and evaluated annually.

The Governance Committee proposes the rules that the Board will live by. This runs anywhere from conflict of interest policies to nominating future officers… and a lot in between. While PHA is a community rather than a business, we also have a strong responsibility to manage well the resources that our members and friends provide. Thoughtful governance provides direction for us to do that.

Then there’s the Conference Committee. PHA’s bi-annual International PH Conference has grown to become the largest PH meeting in the world. The 2012 Conference drew well over 1,500 registrants from 30 nations. Pre-Conference includes Scientific Sessions, the International PH Association Leaders' Summit (PHA has played a central role in expanding the number of global PH associations from three in 2000 to 68 today), support group leader and other training sessions and patient and family meet-ups. And that’s just before Conference opens. Conference itself is a complex agenda of patient and medical education, individual and group connections and plenary sessions designed to display the present and the future.

On Saturday at 8:00 a.m., we moved on to PHA’s Board of Trustees meeting. PHA’s Board is a volunteer group of patients, family members and medical professionals. This blend helps us to get the best from each constituency to benefit our mission: To find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness.

 

After a difficult 2012, we were able to report on stronger financials for 2013. This was especially important considering the major new initiatives PHA has been asked to take on. There was considerable discussion about the PH Care Centers since our Board provides oversight and ultimate governance for that important new program. Also, the Board reviewed progress on our new Specialty Pharmacy Advisory Board, which emerged from the frustration of patients and medical professionals in a field that is undergoing major changes. PHA has recently hired a staff person (Eva LaManna) to manage this program and to help move it rapidly to its next stage, evaluation of pharmacy response time and comparing the patient/medical professional and company view of the success in positively closing cases. You will be hearing much more about this program as we complete Phase 2 of the feedback system.  

The five-year Early Diagnosis Campaign has accelerated with Jessica Armstrong as our new staffer on the project. Jessica began to show symptoms of PH at 17,000 feet in Afghanistan… and was described as a malingerer. Her story appears in the winter 2014 issue of Pathlight. She understands the importance of early diagnosis and has been successfully moving our three committees forward.

We spent considerable time discussing the Chapter structure begun in January 2013. This was something the Board came to after investigating many options. The goal was to assure PHA’s ability to sustain its programs into the future. The Chapters’ goal is to create new funding opportunities in communities to support the programs we are asked to begin and maintain. Progress is good although not instant and the Board must carefully evaluate our investment and movement toward stability and success. Between our grassroots and Chapter events, PHA is on track for more than 100 events in 2014. Board members are among the many in our community who organize and host these events.

Well, there was a lot more, but the Board meeting ended on Sunday afternoon. A number of us were stranded for a while due East Coast weather conditions, leading to flight cancellations… but that’s the nature of service on the Board. 

From fantasy to reality…and only 359 days, 4 hours and 42 minutes away

Once upon a time, a man came to a meeting and said, “We should organize an International PH Conference.”

That man was Ed Simpson, the husband of one of the four founders of PHA, and the year was 1992.  He spoke those words at the organization’s annual meeting which drew a total of 10 people.  He spoke them at a time when the entire treasury was $853.31.

Those words and the unlikely success of the meeting he proposed have changed the lives of thousands of people living with PH.  They have taken down the barriers between patients, caregivers and medical professionals and created knowledge, fellowship and partnerships that have made those fighting this rare disease stronger than could ever have been expected when they were spoken.

PHA’s International PH Conference and Scientific Sessions have grown to become the largest and most unique PH meeting in the world.  Like the disease, Conference is rare … being offered only once every two years.

We have now just crossed the midpoint between our 2012 Conference and PHA’s upcoming 2014 Conference.  As I write this, our Conference timer tells me we are 359 days, 4 hours and 42 minutes from banging the gavel to open Conference 2014.

Here are the basic facts…
              Theme: Racing Toward a Cure
              Dates: June 20 to 22, 2014
              Place: J.W. Marriott inIndianapolis Indiana

But Conference is so much more than a date and place.  If you’re a patient or family member, you can expect presentations from well over 100 medical professionals and many more from patients, caregivers and other experts. Many deep and continuing friendships are formed at Conference … you’ll have the opportunity to meet and connect with people living the same experience from throughout the U.S. and around the world.  Thirty nations were represented at Conference 2012.

If you’re a medical professional, you’ll have the chance to teach, learn and connect.  Virtually all the PH experts in the U.S. and many from other nations attend Conference for its stellar Scientific Sessions, its medical track and the opportunity to connect with patients and their families in very different ways.

You’ll be hearing much more about Conference in coming months - program, registration, special hotel rates and more - but here’s a summary video from a few years back.



Feel free to browse the  PHA You Tube Channel to find other Conference videos (and other interesting stuff) or check out a newsletter from a past Conference.

Conference 2014: a road trip with PHA leadership...

It's coming...

PHA's 11th International PH Conference will be held June 20-22, 2014.

Last week, PHA's Conference Planning Committee met at the Conference site - the J.W. Marriott in Indianapolis, Ind. - to begin its work. Hosting a Conference for 1,500 of our closest friends is no small task ... it is a 15-month effort, this time led by Linda Carr and Rita Orth.  Linda's daughter Hannah was diagnosed at 5 and is now a married college graduate who is raising her adopted daughter.  Rita is a nurse and patient from California who has been living with PH for a number of years.

It's important for as many of PHA's leaders as possible to get to know the Conference hotel, so the Planning Committee wasn't alone last week. More than 50 PHA leaders and staff were at the Marriott for various meetings.

Looking at those meetings gives a pretty good picture of how PHA is governed and moves forward.

On Thursday, March 14, the first meetings began. PH Professional Network (PHPN) is PHA's membership group for nurses, pharmacists and other non-MD medical professionals. The PHPN executive committee members spent a good part of the day planning and discussing their upcoming Symposium - a three-day meeting that will provide education to more than 400 of their medical members. They are also active in producing web-based educational content for nurses, pharmacists and respiratory therapists on PHA Online University.

On the same day, four medical committees, who have spent the past 18 months planning different aspects of a new PHA program to accredit PH Centers of Care, held a workshop to refine their plans and discuss their thinking across committee lines.

This was followed on Friday by PHA's Scientific Leadership Council (SLC) meeting. The SLC is PHA's highest level medical leadership body. Among many other items, the SLC had the opportunity to hear and discuss the Centers of Care committee proposals. Another important discussion took place as a result of the many educational programs being delivered through PHA. The SLC arrived at some conclusions on how it can better coordinate these programs to offer greater value.

PHA's Board committees began their meetings Friday afternoon. The Conference, Strategic Planning and Governanace committees all had lively discussions in preparation for the weekend's Board of Trustees meeting. The Saturday and Sunday Board meeting covered a wide variety of issues from insurance and PHA's developing Specialty Pharmacy Review Board to the Early Diagnosis Campaign and support groups. Good discussions were held related to PHA's sustainability efforts in connection with our Chapters (New York, Midwest and San Francisco) and recently strengthened Development program. A highlight of the weekend was a visit with the Indianapolis PH Support Group which was meeting in the same hotel.

Every one of these patient, caregiver and medical leaders is a volunteer. It is a tribute to the strength of this community that so many (in these leadership groups and beyond) are doing so much to advance the fight against PH.

So, all in all, more than 50 Board members and staff did their important work ... and got to know our Conference hotel at the same time! We're ready to host PHA's 11th International PH Conference! (Well, actually, after another 15 months of exciting work!)