Tuesday, September 28, 2010

PHA Mentors send e-mails from the heart...

Here is a guest blog from Emma Bonanomi.  Emma has been working on developing PHA's new targeted programming for newly diagnosed patients, young adults, patients with associated diseases, family members of adult patients and family members of children with PH.  The newest step is PHA's mentor program. Here's what she writes about it...

Some say letter writing is a lost art. Tell that to the patients, parents and spousal caregivers who recently signed up to spend hours at their computers each week, emailing carefully crafted hope and encouragement to people living with PH. With precisely 26 mentors poised and ready to write, there are as many pen pals on the PHA Mentor team as there are letters of the alphabet. This is an apt coincidence for a group of people who make such powerful use of words.

From Anna in Colorado, living with PH, scleroderma and lupus; to Bill in Boston, with a teenage daughter who was diagnosed with PH in kindergarten; to Colleen in New York, diagnosed with PH in 1975 and eager to answer questions about her experiences with supplementary oxygen, there’s no doubt that the PHA Mentors represent a broad range (if not the A to Z!) of backgrounds and experiences.

Yet like so many members of our growing community, each mentor has a deep commitment to helping other PH patients and caregivers that makes them more alike than different, despite their various ages, associated diseases and hometowns around the globe. This is a set of knowledgeable and caring individuals who value the solace of thoughtful language and shared experience. They are prepared to do what it takes to share their hope and courage with members of the PH community who are looking for help finding information or for a virtual shoulder to lean on.

Take Joni, a loving husband and father in Jerusalem whose wife was diagnosed with PH in 1998. On top of his commitments as a caregiver and as chairperson of PHA Israel, Joni was so dedicated to helping other PH caregivers that he stayed up until 3 a.m. Israel time to participate in a mentor webinar training. And take Liz, a PH patient from North Carolina who drove 30 miles to the nearest McDonald’s for Internet access to prepare for the Mentor Program while she was receiving treatment in Minnesota.

Why do these volunteers make such sacrifices to do what they’re doing? Joni says, “I love to help other caregivers … and hopefully help them appreciate the positive aspects of their situation." Liz says, “I am happy, positive and motivated to do all I can to help others deal with our disease." To these PHA Mentors, who provide support through words, sentences and paragraphs, hope is more than a motto. It’s the air they breathe and the driving force that keeps them striving to reach more people affected by PH.

Having exchanged quite a few emails with these mentors as we prepared to launch this program, I can let you in on a little secret: their brand of hope is contagious. But you don’t have to take my word for it. Email a PHA Mentor and find out for yourself.

Visit www.PHAssociation.org/Mentors to email a patient, parent or caregiver mentor. (Mentors are available for case-by-case questions or for email relationships up to three months in length. Free PHA website sign-in is required to view mentor profiles.)

Monday, September 27, 2010

A rare convergance of meetings...

When I was a kid, I was fascinated by rare convergences of planets.

Maybe that's why last week was so special (maybe there were other reasons, too).

On Thursday, PHA's Corporate Committee met, focusing on the major agenda item of how industry can help PHA build greater awareness of PH among the American public.

This was followed on Friday by PHA's Scientific Leadership Council meeting. Providing guidance and direction for PHA's complex array of scientific and medical programming and interest, this leadership group's agenda is always dynamic and wide-ranging.  Last week's meeting took us through discussions and decisions on everything from expansion of PHA's research program, analysis of an investigator training program, new developments related to our medical journal, and consideration of a new prostacyclin document...to the pros and cons of defining expert PH centers, recommendations to Social Security on how they handle PH disability issues, discussion of next steps for PHA's Medical Education Fund programs and the rapid evolution of our pediatric programming. As always, it was a busy and fruitful day.

But that wasn't the end of the week.  On Saturday we had much more in Towson, Maryland.  With their new Chair, Louise Durst RN, PHA's PH Resource Network Executive Committee met to plan their next steps.  This group within PHA, now composed of over 900 nurses, pharmacists, respiratory therapists and other allied health professionals has been growing rapidly.  their leaders discussed their 2011 Symposium, changes in their strategic plan and support of various PHA patient and medical programs.

Simultaneously in the same hotel, PHA's Baltimore/Washington area regional "On the Road" patient Conference took place.  Almost 250 attended a full day of programming that included sessions on current treatments, diagnosis, impact on family and relationships, eating better, traveling with PH, exercise and yoga and a whole lot more.  All the committee planners (led by Charles Burger, M.D. of Mayo-Jacksonville) and speakers were volunteers, including many nationally and internationally known physicians.

Well, I wish I had time to write about the great people I met and the stories I saw and heard but there's not much time to put our feet up. Our next regional "On the Road" Conference is next Saturday in Dallas and I'll be preceding that with a Thursday 30 City Medical Education program led by Gregory Elliott, MD in Provo, Utah.  More on that next week!

Thursday, September 23, 2010

Back & forth...& worth it

Sometimes, it's worth the jet lag...

I just got back from a four day trip to Barcelona, Spain...well, maybe a little less with the time in the air.  The itinerary included a presentation to the leaders of PHA Europe, work on a global survey of PH patient and caregiver depression and anxiety issues, getting to know a new company in the field and attendance at the European Respiratory Society Conference.

The PHA Europe Annual General Assembly was a thrill for me to attend.  I remember just a few years ago that this confederation was just an idea.  Now- in Castelldefels, a beautiful beach suburb of Barcelona - it is clear how far that idea has come.  Representatives from PH associations in Austria, Belgium, Bulgaria, the Czech Republic, France, Germany, Greece, Hungary, Ireland, Israel, Italy, the Netherlands, Norway, Poland, Portugal, Slovakia, Spain, Sweden, Turkey and Switzerland were meeting to discuss ways they can better work together and help each other grow.

Many of the leaders, including PHA Europe's president, Gerry Fischer (Austria), and Vice-President, Pisana Ferrari (Italy) and Melanie Gallant-Dewarin (France) are old friends who have attended PHA Conferences and who we've worked with on many projects.

I was honored to be invited to give a presentation about PHA in the U.S.  As I spoke and heard the questions during and after, it was clear that, while we may speak different languiages and live in different places our cause is the same...and that the cooperative spirit and common purpose that has made progress possible and rapid in the U.S. is the backbone of growth in Europe, as well.

We look forward to our continuing and  growing partnership.

Tuesday, September 14, 2010

Out of hope...joy

I couldn't resist one more posting on Lil Long's swim.  Yesterday, PHA board member Steve White who represented us at Lil's crossing sent his story on what took place and its meaning. It's wonderfully told and well worth sharing.  Also, last night Lil sent a video (which you can see below) made by her friends Nancy and Lisa.  It's tells the adventure of the Mt. Moriah Choir in getting to the victory celebration.  They surely do know how to party in the Delta!

Dear All,

I had a great trip down south for Lil Battle Long's swim across the Mississippi River to honor her dear friend Nicky Roberts who lost her struggle with PH just three years ago.

Friday I flew from Albany, NY to Memphis and from there drove to Cleveland, Mississippi though fields white with cotton to meet up with Doug Miller, producer for the film crew, and Gareth Gwyn from Actelion. We then headed over to Lil's home in Duncan and enjoyed a great meal in one of the most interesting homes I've ever been in. It was creatively remodeled by Lil and her husband Henry Earl Long. It's almost impossible to describe what they've done with this house. Suffice it to say that the kitchen, which is like something you'd see on the Food Channel, has bright red cabinets and counter-tops made from rare African zebra-wood, and a guest bedroom has a ceiling covered with antique doors that Henry Earl got from an architectural salvage yard. The main thing about their home, though, is its warmth and openness to guests. When you spend a little time with Lil and her wonderful family you get a glimpse into how incredible her support system is and how loving and courageous they all are in facing Lil's PH. But we made it an early evening since Lil wanted to get to bed and get rested up for the next day.

In the morning, all wearing red T-shirts with "Go, Lil, Go!" printed on the front (courtesy of our friends at Actelion) we met up with the film crew and Henry Earl's step-son Justin to make our way over to a boat-launch on the river. We drove up and over a levee and down the other side to the shore of a lake that is parallel to the Mississippi River. There we met up with Lil, Henry Earl, Lil's son Battle, a newswoman from a local TV station, and a friend of Lil's who is a respiratory therapist. Justin and Henry Earl's boats were put into the lake and we headed south to a cut that gave on to the mighty river itself. Where we were is a very remote and wild area teeming with birds of all kinds (egrets, wild turkey, gulls, etc.). As we went through the cut connecting the lake and the river, enormous carp, which were disturbed by the sound of the boat motors, leapt out of the water to a height of two or three feet. Some of the fish were 10 to 15 pounders, according to Justin who grew up on the river and was a superb tour guide.

After checking out a few possible launching sites, we tied up the boats at a sandy stretch and Lil began to prepare for the swim. She was interviewed by Doug for the film first, and then she asked for some private time with me to pray and take communion and have a blessing while the others waited a dozen yards away (we Episcopalians stick together!). Finally Lil put on an inflatable floatation device, flippers, webbed gloves, and a snorkel. She also had an audio player with some Celtic music that had been some of Nicky's favorite music. She was ready to go, but she had to wait for a tug pushing about 8 or 10 barges loaded with rocks to pass by. After collecting her thoughts for a few minutes, she gently eased into the river and headed for the Arkansas side which was about a quarter of a mile away, straight across.

The two boats stayed near Lil the whole way over. At one point Lil rolled over on her back and began laughing. She told us later that she had felt something slimy -- probably a huge catfish or some other denizen -- slide along her leg and this made her laugh. Lil had predicted that the swim would take about an hour. But 27 minutes after pushing off from the Mississippi shore, she was on the Arkansas side feeling tired but triumphant. She rested in the water for about 5 or 10 minutes before getting into the boat. She said she was amazed she had done it and now knew she could do anything and that PH would not stop her. She said she felt Nicky with her all the way, as well as the presence of God, and my daughter Christen, and Doug's mother (who also died of PH seven years ago). It was a powerfully emotional moment for all of us who were there with most of us shedding a tear or two.

On the way back to the boat launch we estimated that, given the current that carried her down the river, she swam a total of about half a mile. Pretty good time for someone with PH! As we came out of the cut and into the lake, a giant carp leapt out of the water and smacked Gareth on the left shoulder hard. Justin estimated it was about a 10-pounder and we were going maybe 30 miles an hour. The fish left a slimy, smelly impression on the left sleeve of Gareth's T-shirt that I thought looked rather like Homer Simpson. We all advised Gareth that he might want to change his shirt before going to the airport.

This was followed by a party with the best fried catfish I've ever had, a wonderful church choir of young people from Jackson, MS, a local flamboyant antique blues singer who worked the crowd, and lots of Lil's family and friends. It was a very happy occasion and there was much pride in Lil's accomplishment. Lil glowed and, with a glass of champagne in one hand, gave a hug around the neck to one and all and accepted everyone’s congratulations.

What a day of honoring Nicky and all who have, and continue to struggle with PH! Lil’s swim was an act of courage and determination that shows the value of exercise for PH patients as well as the bonds of love and hope that unite everyone in the PH community. I'm confident that Lil's story in what I'm sure will be a superb film will be inspiring to many people who fight this wicked disease for along time to come.

I am full of gratitude for the opportunity to be a small part of this incredible event.

Steve White

...and as a bonus, here is the Mt. Moriah Choir performing at the celebration!

Saturday, September 11, 2010

On the ramp to Awareness Month, part 2...

Awareness Month in November may seem like it's a long way off...but, here at PHA, the preparations have been long underway.

This year's theme will be Climbing Toward a Cure...in recognition of the focus brought to PH awareness by Drs.Benza and Frantz and Jessica Lazar, P.A.'s Kilimanjaro climb and the related Unity walks in communities throughout the U.S.

On Firday, PHA's 2010 Awareness Month page launched.  I hope you'll visit and consider ways you can help us all Climb to the Cure.

In the meantime, I hope you'll take a look at the video we presented just before the climbers took the stage on June 25 to tell their story - and ours - at PHA's International Conference.

On the ramp to Awareness Month, part 1...

It's been an exciting Saturday morning...

While I've been at my desk preparing for upcoming meetings in Europe and the U.S., I've also been tracking PH patient Lil Long's heroic swim across the Mississippi in memory of her late friend, Nicky Roberts who lost her own struggle against PH in 2007 (See August 27 and May 31 blogs).

All morning PHA Board Member, Steve White and Actelion's Gareth Gwyn and I have been texting back and forth.  Steve is representing PHA at Lil's swim and Gareth's company has loaned us a film crew to document Lil's amazing feat.

At 10:36am, Gareth e-mailed me the picture on the left.  That's Lil coming out of the Mississippi River after a successful swim and months of preparation and building PH awareness in her region of the country.

This comes 10 days after PH patient Christie Breault's appearance on the Today show. 

As we move toward November and Awareness Month, the question is, "What's next?"

All I know is that whatever the answer, the certain thing is that awareness is the essential first sep toward solutiions and PH is no longer living in a dark corner.  Lil, Christie and all who are building awareness, thank you for bringing the power of one - your own efforts - in partnership with and to the benefit of many.

If you're moved to be a part of building PH awareness, Awareness Month is coming!