Thursday, May 23, 2013

Travels with Carl...#1

Tracy, Shelle, Carl, Wayne, Trudy, Joy, (in front)
Traci, Shelle, Carl, Wayne, Trudy, Joy (in front)
Since December, Carl Hicks has taken on a new responsibility for PHA - building our important new Chapter structure.  As he takes on considerable travel for this job, Carl has been taking that as an opportunity to connect with PHers around the country.  This is the first in an occasional series of guest blogs from Carl...

Starting a new practice of calling every special events organizer a few days before as well as after their event in order to be certain we’ve done our best to support them, I called Trudy Seidel. Trudy, one of our PAH patients had organized “Pray Phor a Cure,” a large, community-supported “garage sale” to be conducted in Vinton, Iowa, on May 4th. This was to be Trudy’s first event but instead of trepidation, (what I had with my first event), Trudy sounded ecstatic!

“We are doing so much more than a community garage sale,” she gushed, “we are having a silent auction as well as a live auction, and it has grown so large that we had to add another large building at the fairgrounds for the venue!” Continuing she said excitedly, “We have people coming from all over including from out-of-state, and I am so, so pumped!” I asked her if she minded if I dropped in, for after-all, I was in the neighborhood. Kinda, that is.  I was in Chicago for our Midwest Chapter’s first event that was scheduled for the very next day on Sunday, which put me a scant 275 miles away. I couldn’t think of a better way to spend a Saturday so, up at 4:00 AM, I launched across the prairies of Illinois for the farmland of north central Iowa in my little rental car.

Little zebras!
The GPS took me right to the Vinton Country Fairgrounds located in Vinton, a farm town of about 5,300 fine Americans. As I entered the door, it was readily apparent that most had donated something to Trudy’s cause, (your PHA), and most were there to provide the single mother of four all of their support. It also became once again apparent to me that our PH family extended to every corner of America as patients and caregivers I’d met during years of travel across the country began to exclaim, “There’s Carl! Carl is here!”

As my eyes became adjusted, coming in from the bright sunlight, I spotted Vern and Joy Gore, who’d flown in from Arizona the day previous to assist Trudy in her first event. All as Joy, a PH patient, battled PH AND cancer! There was Wayne Wilson (PH patient), and his wife, and Ginger Kahler, another patient who like Wayne was now confined to a scooter. Her big blue eyes welcoming, I’d collected my first of scores of hugs, less than 45 seconds into the door.

Zebras wherever we go...Sometimes it is PH
Next I encountered the “hostess of honor” herself, Trudy. She was effusive with happiness that I would drive out there to participate in her event, and so was I. The large room was abuzz with activity and everywhere I looked was evidence that a herd of zebras had thundered in off the savannah. Black and white stripes were in abundance whether it would be children exiting the face-painting activity to home- made posters that clearly depicted the importance of looking beyond the hoof beats.  It was so, so exciting and making it even more so was running into Shelle Goodwin, no-longer a PH patient, now in her fifth successful year past her double-lung transplant. That good news was dampened by seeing Merlin Krantz, a farmer in his seventies who’d recently lost his wife to PH. His comment to me was, “…she’s better off, I’m not.”

Tables were piled high with donated goods ranging from paintings to children’s clothing, tools, and fresh baked goods, lovingly prepared in our nation’s breadbasket. I decided to walk next door into the next building to see what items they had for sale in the live auction scheduled for noon. Smack in the middle of the doorway I literally ran into our own Traci Stewart, board member and Chair of PHA’s Pulmonary Hypertension Professional Network (PHPN). Wow, what a great surprise and an even greater hug!

Neatly arrayed next door awaiting the anxious bidders/ buyers were the items to be sold at live auction. At least eighty folding chairs were lined up in front of the auctioneer’s podium, which was to be ably manned by LeRoy Deutsch, a real auctioneer and Trudy’s father. Much to my surprise, every single one was filled and the walls were lined by those who’d come out to share in the struggle against PH. I thought how nice it was to see that outpouring of support and love for their neighbors and it reminded me of how rural Americans were once known to come far and wide to perform a barn-raising, banding together to make it happen. In the larger picture, that is what we are all doing in our PH PHamily across the country whether we are in bib-overalls and John Deere caps, pin-stripe suits or scrubs.

My biggest take-away from the weekend, in which Trudy raised more than $12,000 in her first event came from a discussion I overheard while there. One of the farmers in attendance sidled over to Trudy and asked, “What are you going to do with all this money, use it for your medical bills?” “No, Trudy replied, I’m going to give it to PHA. They can find the cure for it, and I can’t.”

Dorothy's Victory...

Dorothy with her granddaughter,
Jackie, and Rino at Conference.
Dorothy Olson, one of PHA's four founders, passed May 18 at age 88. Diagnosed in 1978, Dorothy searched years to find other patients with whom she founded PHA. Our community thrived on her lifelong leadership, and we are grateful for all she did to fight PH. I wrote the piece below for her May 21 memorial service.

If Dorothy Olson's life could be described in two words, they would be Dorothy's Victory.

When Dorothy Olson was diagnosed with pulmonary hypertension in 1978 , it was 18 years before the first treatment for the disease.  It was 7 years before completion of NIH research that showed that, without treatment, only half of patients would survive to 2.8 years.  And, it was 13 years before Dorothy Olson sat around a kitchen table in Indian Spring, Florida with Pat Paton, Judy Simpson and Teresa Knazik to found what would become the Pulmonary Hypertension Association.

Dorothy beat the odds with her survival for 35 years from her diagnosis. But she did far more than live a full and complete life to the age of 88. She lived a life that made a difference.  She made a difference for thousands and thousands of patients who had the same disease that she did.  The difference she made will affect patients for many generations.  It is her legacy.

This is her story...

When Dorothy was running through an airport to catch a flight in 1978, she was stopped by two stewardesses who saw that she was ready to collapse.  They convinced her to delay her flight until she felt better.  Several weeks later, she was admiring a bunting bird through her bedroom window...when she collapsed across her bed.  She was hospitalized for five weeks with no diagnosis.  Then, a young resident suggested it might be a rare illness - pulmonary hypertension - that had been mentioned in passing in one of his classes.

Dorothy had her diagnosis and she had her mission.  She even adopted a new motto: "if it is to be, it must be me".

Dorothy began a long, lonely and years long search for other patients.  When she and Pat Paton, Judy Simpson and Teresa Knazik met around Pat's kitchen table in 1991, it was not long after only 187 diagnosed patients had been identified in the U.S....without any treatments to help them.

The women began a xeroxed newsletter and gave it to their doctors, who gave it to patients.  Soon they had identified many more patients than the 187 the federal government had located five years earlier.  They began and staffed a volunteer telephone helpline to talk to patients whose lives had been turned upside down by a PH diagnosis. 

 One day, a young woman called the helpline.  She was in the parking lot outside her doctor's office. She was standing there with her father and both were terrified. Her doctor had just told her that she had PH and that she had six months to two years to live.  He gave her a brochure from the organization the four women had founded.  The helpline was her lifeline. Dorothy told her she had been living with the disease for 18 years.  The woman burst into tears.

The organization Dorothy co-founded grew over the years and she remained active, both on its board and on its telephone helpline. As Dorothy's vision declined, she told leaders, "I may not be able to see anymore but I can still dial a phone.  Use me."

Today, the organization Dorothy, Pat, Judy and Teresa co-founded is recognized around the world and includes two medical organizations.  The disease itself has as many or more treatments than all but two of the 7,000 rare diseases identified in the U.S.

None of that would have happened if Dorothy hadn't begun her search and spent the 35 years from the day of her diagnosis to the day of her death, connecting patients and fighting back against the disease that had intruded in her life.  That is Dorothy's Victory.

To the pulmonary hypertension community, Dorothy Olson is a hero who will not be forgotten.  She lives on in our love and our gratitude

In her own words...

Here is an audio interview with Dorothy (November 2012) by PHA board member Steve Van Wormer.


Wednesday, May 15, 2013

PHA on the road again...

When I came to PHA in 1999, one of the first things that struck me was the excitement about our International Conference.  It was easy to understand why when I had the chance to attend the June 2000 Chicago Conference.  Given the amount of work to produce these very special events, the reason PHA hosts them every two years, instead of annually, also became clear.

That 24 month gap led to a dream by board members.  It was that PHA would someday be able to produce annual regional Conferences, events where people wouldn't have to travel as far to receive the valuable education and networking opportunities that such meetings offer.

It took almost a decade but in 2009, PHA had grown to the point where we were able to make the dream a reality.  The vehicle we created is PHA on the Road…the patient component of PHA’s Medical Education Program. 

Between 2009 and 2012, PHA on the Road has allowed PHA to bring internationally recognized medical professionals and other experts to 12 cities for not-to-be-missed (and fun) day-long conferences.

This year, PHA is organizing four Regional PHA on the Road Conferences…

If you’re in the area, you won’t want to miss these events.  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 for all four meetings, space is limited - so register soon!  Childcare is complimentary (but your child must be pre-registered).  PHA is glad to answer any questions you may have about this exciting program...we look forward to seeing you on the Road!

Monday, May 13, 2013

Insieme si puo!

The Second World PH Day has come and gone and the World PH Day website shows activity has grown immensely from the first event a year ago.

Today, we received a video (below) from PHA Europe that demonstrates nothing is impossible...

On May 5, 2013 - World PH Day - a variation on the flash mob took place in St. Peter's Square.  Italian PH patients and families had encouraged Pope Francis to include words of encouragement to PH patients in his weekly public address and they had received word that he would do so.   As members, families and friends of the two Italian PH associations (AMIP and AIPI) waited for the Pope's words, the group gathered around their PH signs and blew bubbles...they breathed in a very public way.

Congratulations to Vittorio Vivenzio and the other leaders of AMIP (Associazione Malati di Ipertensione Polmonare), including our longtime friends,  Luisa Sciacca della Scala and Maria Pia Proia for what AMIP made possible.

AMIP's slogan INSIEME SI PUO’! means together we can.  They chose those words "because the voice of many patients together can be heard a far distance".

Thank you AMIP for proving the truth of your slogan.  You took PH awareness from the Pope's mouth to ears throughout the world.

Thursday, May 2, 2013


I don't spend a lot of time on Facebook but today I was struck by Mia's World PH Day (May 5) message to her 7 year old brother, Daniel.  Daniel has PH.

The card that Mia is holding is being used by many patients, families and medical professionals around the world to tell their story as part of a Worldwide Photo Mosaic. Watch her video and submit your own photo to be part of the Mosaic.

Wednesday, May 1, 2013

From Yonkers to common cause

Two days after I attended Dr. Robyn Barst’s funeral in Yonkers, N.Y., Julia Friederich (PHA's International Associate) and I flew across the world to Saudi Arabia.  We had been invited to attend the Saudi Association for Pulmonary Hypertension’s (SAPH) educational meetings, the Sixth Annual Pulmonary Hypertension Meeting and Third Pulmonary Hypertension in the Young Assembly.

The two events were more than 6,000 miles apart, but they had an extraordinary connection.  The SAPH meeting was opened by the Conference Chair,  Dr. Maha Al Dabbagh, a pediatrician specializing in PH.  She began with a tribute to Dr. Barst, describing her contributions to the field.  This was followed by SAPH president, Dr. Majdy Idrees, asking the participants to stand for a moment of silence.  Robyn Barst’s reach and contributions were indeed global…in 2008, she had helped develop the Saudi guidelines for the diagnosis and treatment of PH.

The two days of SAPH meetings were important in expanding knowledge of PH in the region with attendance from many nations.  I was particularly interested to learn about the PH experiences in many nations in the region, including Qatar, the United Arab Emirates, Saudi Arabia, Egypt and the Sudan. These presentations were different from those I usually hear and demonstrated both similarities to and differences from our own experience in the U.S.

An important reason for our attendance at the meeting was a leadership discussion on how PHA could assist SAPH in the development of a patient structure.  It is always exciting to me to see physicians interested in building patient support and leadership structures – and always something PHA is anxious to support in whatever way we can.  Whenever and wherever PH leadership and awareness grow, we all become stronger in the fight against this disease.

It was a wonderful experience. We thank our hosts at SAPH and look forward to rapidly evolving this partnership.