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:

• Become involved in awareness raising
• Join our advocacy efforts
• Find a support group near you
• Attend a special event in your area
• Access PHA's educational offerings: PHA Classroom (for patients and families) and PHA Online University (for medical professionals)

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 “7^th 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