Wednesday, September 17, 2014

PHAware: Taking Us from Rare to Everywhere

This week, I asked Renee Hockaday, PHA’s Director of Communications, to guest blog on an amazing and growing media awareness program at PHA that holds the promise of helping to make our fellow citizens truly learn and know about pulmonary hypertension… and help us build a better future.

When you meet PHA Board member Steve Van Wormer, you are struck by his boundless energy. But if you look a little deeper, you’ll see his profound commitment to raising global awareness and finding a cure for pulmonary hypertension.

It started with PHA’s public service announcements (PSAs), which Steve put together on a shoe string budget and a Tom Lantos Innovation in Community Service Award. Through our PSA Media Blitz, those PSAs have now been delivered to more than 11,500 TV and radio stations across the country. Each day, new stations and networks are saying “yes” to airing our PSAs while celebrities are sharing our stories.



“I wanted to do something so that more people know about this disease,” says Steve. “The PSAs have taken off and now we can do even more.”



Steve’s vision and determination have thrust our PSA program onto the national stage by creating relationships with Fox Networks Group, Fox Hispanic Networks, CBS, Radio Disney, Hulu, Univision, Telemundo, ESPN, Warner Bros. Records, and Universal Sports Network as well as engaging celebrity supporters – Michael Buble, Laura Dern, Florence Henderson, Courteney Cox and others. This is broadening our audience at an exponential rate, quickly moving the conversation from “What is PH?” to “I’ve heard of that disease… I saw it during the game last night!”



But it doesn’t end there. Marie Mascia-Rand, Director of Community Engagement for PHA's Greater New York and Philadelphia Chapter, has leveraged her connections and relationships in the New York City area to create some amazing exposure for PHA. Because of her efforts, PHA’s PSAs have aired on the TVs in New York City taxicabs – yielding nearly one million impressions during a recent two-week run. And in November, you’ll see our newly branded PHAware PSA Campaign appear in Philadelphia taxicabs, on the largest video screen in the world – the NASDAQ building in Times Square, and in a new print campaign on New York City taxicab toppers. Her passion for this project comes from her own experience as a caregiver, having lost her daughter Chloe to the disease.

So what is PHAware?

PHAware’s goal is to elevate and leverage PHA’s mission and messaging to the general public, news media and potential donors who are becoming aware of PHA through our ongoing PSA Media Blitz.

PHA’s grassroots media campaign (formerly the PHAware Campaign) is now called the Media Action Network. The name change is part of this exciting new opportunity to launch PHAware.org as a resource for those who hear about PH through PHA’s public service announcements, cab toppers and other public awareness efforts.

To celebrate this new PHAware, we are developing a new website and a social media portal to quickly connect to all our outward facing media messaging. PHAware.org will officially launch Oct. 15 – just in time for Awareness Month! In the meantime, you can go to the website to get a sneak peek of what’s to come, and be sure to:

  • “Like” us on Facebook
  • Follow us on Twitter and Instagram @PHAware
  • Use the #PHAware hashtag and post inspirational stories on your own social media sites
  • Share this information and invite everyone to help heighten PH awareness

And this is only the beginning. We see our PHAware messaging reaching pharmacies, supermarket checkouts, gas station TVs, ATMs, hospital and pediatrician TVs, sport arena jumbotrons, billboards and beyond. This exposure will allow us to tell patient stories in ways never before imagined. This opportunity will be the catalyst to create a greater impact on the discourse of healthcare and disease prevention in this country.



As the momentum continues to build, we encourage you to be a part of the campaign. 
Make calls to TV and radio stations and encourage them to play our PSAs.

Visit www.PHAssociation.org/PSAs for call scripts, a how-to webinar and step-by-step instructions.

Contact ProjectPSA@PHAssociation.org for a list of stations in your area.

Go to PHAware.org to see how we are telling the PH story.

Like us on Facebook

Read about us on Twitter and Instagram. @PHAware

And look for us in Times Square in November!

Rare to everywhere indeed.





Wednesday, September 3, 2014

Using film to change the world...

In the U.K. there is a graffiti artist and filmmaker named Banksy. This week I read a quote from him that went like this…

Film is incredibly democratic and accessible, it’s probably the best option if you actually want to change the world, not just re-decorate it.

I was struck by his words. They truly reflect how our community uses film to tell our story and to make a better tomorrow. This blog is about three efforts.

The first is from a young girl living with PH. Hers is the story of a young hero, fighting for a better tomorrow. Watch it below or on Facebook




The next video is a mirror to PHA's International Conference. Each Conference, PHA creates a video to try to capture the energy and excitement of the event. Conference is the one time that the strength of the community can be seen and felt in one place. This is our effort from June 2014. We hope you enjoy watching. Oh, and staff are now reviewing more than 40 of the plenary and breakout sessions. Soon you'll be able to watch those too. We'll let you know when they're posted on www.PHAssociation.org.



The final video is from Team PHenomenal Hope. Thanks to Chuck Finder and the good folks at University of Pittsburgh Medical Center, we have a new 23-minute film telling the story of their non-stop Race Across America to raise awareness and funds for pulmonary hypertension. Get your popcorn and settle in!



If there's a lesson from these videos, it's that there are many ways to effectively get our story out. Whether told from a webcam or with professional equipment, effectiveness comes from a good idea and just going out and doing it.

Wednesday, August 20, 2014

Out on the Road: PH Education Coming Straight to You

This week, I asked Danielle Thomas on our Meetings staff to tell you a bit about our September PHA on the Road events in Houston and San Diego. These are PHA’s regional one-day conferences. We began offering them in 2008 so that people who weren’t able to come to our International PH Conference could have Conference come to them. 

Why should you come or, if you don’t live in the area, why should you take a minute to tell your family or friends who do? Take a look at the program book, and you’ll know right away!

As a new PHA staff member, I am really looking forward to my first PHA on the Road: PH Patients and Families Education Forum, and I want to encourage as many of you as possible to join me there. In a little over two weeks on Sept. 6, I will be boarding a plane and heading to Houston, Texas, for the first of two PHA on the Road forums. The second forum takes place on Sept. 20 in San Diego, Calif. If you’re in the Houston or San Diego area, you won’t want to miss this event. If you're not, you'll want to tell friends and family who are. Registration is FREE and includes continental breakfast and lunch. While registration is still open, I have to stress that space is limited - so register soon! Registration for Houston closes Tuesday, Sept. 2, at 3 p.m.

If you’d like a sneak peek at the great sessions that await you, just keep reading. I’m happy to share that the PHA on the Road sessions for Houston (Sept. 6) have just been announced! Most of the Host Committee listed below will be presenting at the following sessions. Stay tuned for announcements about San Diego, Calif., (Sept. 20) soon.

In Houston, we’ll learn about the basics of PH, PH and associated conditions and much more. We’ve even got a session in Spanish! Here's a list of the sessions, or you can check out the program book for more details.

General Sessions: Medically Led
  • Diagnosis: How is PH Diagnosed?
  • Types of PH
  • Current Therapies & Management of PH: How Does My Doctor Choose the Right Medication for Me?
  • What’s on the Horizon?: Clinical Trials & Drug Development
Breakout Sessions: Medically Led
  • Connective Tissue Diseases & PH
  • Diagnósticos, Tratamientos y Viviendo con HP - Spanish Session
  • Exercising and Dining Better
  • Lung Transplantation for Pediatric and Adult Patients
  • Preparing for Travel and Emergency Situations with Adult and Pediatric PH Patients - Offered Twice
  • PH & Other Associated Conditions: Lung Diseases, Left Heart Diseases & CTEPH
  • Workability, Insurance & Disability with PH
Breakout Sessions: Patient and Family Led
  • A Patient-to-Patient Guide for Living with PH
  • Can You Hear Me Now? Communicating about PH
  • The Caregiver’s Guide to Surviving Pulmonary Hypertension
Several medical professionals are helping to put this amazing event together in Houston. The PHA on the Road Host Committee for Houston, Texas, includes:
  • Deborah Jo Levine, MD - Regional Committee Co-Chair/University of Texas Health Science Center at San Antonio, San Antonio, Texas
  • Zeenat Safdar, MD - Regional Committee Co-Chair/Baylor College of Medicine, Houston, Texas
  • Royanne E. Holy, RN, BSN - Baylor College of Medicine, Houston, Texas 
  • Maureen Mayes, MD, MPH - University of Texas – Houston/Medical School, Houston, Texas
  • Bela Patel, MD - University of Texas at Houston/Health Science Center, Houston, Texas
  • Fernando Torres, MD - University of Texas Southwestern/Medical School, Dallas, Texas
  • Nidhy, Varghese, MD - Texas Children’s Hospital, Houston, Texas
All of us at PHA are happy to answer any questions you may have about this exciting program. Be sure to check out our website for more information. I look forward to seeing you soon on the Road!

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.