Wednesday, December 23, 2009

Some days are a joy...some are not

We celebrate so many advances in the treatment of PH that sometimes we forget the other side of the coin.

Yesterday was a sad day.  Within a two hour span we learned of the passing of two good people, two good friends, Phil LeGrande and Wendy Bockhorst.

May they rest in peace.

Debbie Castro wrote to fellow staff about Phil...

Dear Staff,

For four years, Phil donated hundreds of hours, lots of energy (of what he DID have), tons of inappropriate jokes, and even $125 to PHA during an urgent matching funds competition on Facebook. He was a support group leader, an advocate on the Hill, and one of our most steadfast and reliable daytime office volunteers.

He usually came into the office with a great attitude, in spite of always having to take breaks to rest. Of course, he came in feisty some times, but he always wanted to make a difference in the community and to help others. He came in with body aches and pains and never complained about it. He complained about everything else, but never about his pain. I loved him for his ability to LIVE life and to expect great things out of himself and others around him.

About a year ago, he stopped responding to our emails, calls, and even letters. It turns out that he was just too sick battling his PH and perhaps residual symptoms of lung cancer.

I posted a message about Phil LeGrande passing away on FaceBook and heard back immediately from at least 4 of our old volunteers. Everyone is saddened to hear this news.

Jess McKearin wrote to us about Wendy...

Dear all,

I’m very sad to report news that Wendy Bockhorst passed away earlier today. Her husband Bill called to let us know. Wendy was a PH patient, Support Group Leader in Phoenix, Ariz., advocate, special events organizer and an all-around wonderful woman.

Wendy definitely was an example of hope to other patients. Bill said that Wendy always made a point to tell others that she lived with this disease and wanted to make the most of that opportunity to impact others’ lives. They were also recently remembering the 2008 Conference together and Wendy was talking about how excited she was to attend next year’s. She was already planning for her 2010 Cure PH Casino Night – her 6th special event overall.

She spoke of why she loved planning events: “One main reason that I get involved through special events is because my PH is genetic…if I can continue working to raise funds for and awareness of this disease, then maybe the next generation won’t have to suffer as much. So much has been done in recent years, and PH treatment options now are just unbelievable... By continuing to stay involved, one day we can find the cure.”

Please don’t hesitate to offer other thoughts or memories of Wendy if you’re willing to share. I’ll create a condolence card for us to sign tomorrow.

The fight goes on.

Friday, December 11, 2009

Kahina's story...

Thanks to  Christine Dickler, PHA's Associate Director of International Services, for this guest blog...

During the holiday season, it’s more apparent than ever how lucky we are to have so many friends and partners in this vibrant community. With hundreds of support groups, dozens of online community groups, and local events to draw us together, we can take stock of the incredible people we meet thanks to this otherwise difficult disease. And new connections are being made every day, in places much further than we might ever have imagined…

PHA’s International Services department is an active hub for patients, doctors, and associations outside the US. The connections PHA makes with the global PH community enhance and inspire our work every day. This fall, we were contacted by a young woman in Algeria who was in search of medication for her mother. Kahina explained that though the drug was approved in her country, her mother frequently did not receive the deliveries in time – an obstacle that left her without treatment for days, weeks, even three months, while the life-saving drug was locked up in customs. Every few months for more than two years, Kahina travelled to the capital to demand that the government approve funding to pay for the next supply, that the hospital place the order well before it was needed, and that customs release the treatment promptly.

As we learned more about her mother’s immediate needs – medicine that would dramatically improve her pressures and keep her well – Kahina’s story revealed a much greater need: advocacy for every patient in Algeria and medical education to ensure adequate treatment. From what Kahina knows, there are only three or four PH patients identified in all of Algeria, and these patients, too, must endure periods without proper therapy.

In the story of Kahina’s mother, there are many heroes. There is the doctor in France who finally recognized her symptoms, allowing her to begin returning to her life as an active painter. This doctor continues to advise her local physician, who must perform tests she doesn’t fully understand in facilities that aren’t fully equipped for the task. There are the government officials who, not understanding the severity of PH or the importance of the expensive drugs, approve an order that costs 20 times more per month than the average monthly income. There are the pharmaceutical representatives who ensured that an ally was placed in the central pharmacy so that medicine would be ordered correctly, and in advance.

And of course, there is the story of a daughter who made friends across the globe in order to keep her mother safe – even if it means taking on new battles! With one of her mother’s ten drugs made more accessible, Kahina says that she’s start fighting to get another approved for reimbursement, saying “…another issue to be solved , I’ll try to do my best again!”

Tuesday, December 1, 2009

A Thanksgiving message...

On Thanksgiving day, I checked e-mail not expecting to find much.

How wrong I was.

It was a pleasure meeting you last week at the Pulmonary Hypertension Summit at the Cleveland Clinic. I was there a few years ago when you spoke at that summit, but did not get to meet you then. I want to thank you again for all the work that you do. It means so much to me and to other patients with this terrible disease. On this Thanksgiving day, I am very thankful for all the things in my life that I am blessed with. I am also thankful for people like you and the PHA and for the amazing work that you do. I thank you from the bottom of my heart (and lungs!). May you have much more continued success with the PHA. I have attached a picture of you and I from the event and also a picture of myself with Merle and my doctor, Dr. Minai. Happy Holidays!

Maria Martuccio

The thanks is all mine Maria.  You motivate me. You motivate our staff who I shared this with. You and people like you are the drivers of our ever-accelerating vehicle.  Thank you.

Tuesday, November 24, 2009

Roice Fulton is a young PHA staff member who attended PHA’s Nov. 18 Congressional Luncheon. With his permission, I’m sharing the note he wrote to his parents the following day. I think it offers a fresh look at a great American tradition.

So let me tell you how my day went yesterday.

Every year, we organize a Congressional Luncheon where we invite folks on Capitol Hill to sit and eat while listening to doctors, patients and our president talk about the disease, with the objective of garnering congressional support for our bill. Among other things, the bill requests $15 million over three years to go to governmental agencies to promote research and awareness of pulmonary hypertension. We have our patients ride out to the Hill, attend and speak at the lunch, and afterward we group up and go meet House reps to talk one-on-one about the disease and lobby for the bill.

Our “435 Campaign” aims to secure support for our bill from all 435 members of the House (I believe currently we’re at a little over 200). Getting widespread support from the other half of Congress, the Senate, is a bit tougher, there being only two for each state receiving pleas to support every cause imaginable—but I’ll get to that.

This year, the lunch was held in the Library of Congress, in a gorgeous room that we filled with patients and caregivers. We had a great turnout of Congressional staff, who listened to the stories of a doctor (Dr. Paul Hassoun of Johns Hopkins), a patient (Jeanette Morill), a caregiver (Pam Peterson), a congressman (Rep. Kevin Brady of Texas, a staunch supporter of our cause), and the widow of a leading member of the House of Representatives (Tom Lantos, a major figure in the fight for PH). The event was successful in opening more than a few people’s eyes about the disease.

After the lunch, there were a number of one-on-one visits, all with House of Representatives members and staff; these went very smoothly. House visits are pretty straightforward and rapid-fire: you go to the representative’s office, meet either with the Congress Member or his or her health policy assistant, present your case, ask for co-sponsorship of your bill, and he or she says yes/no/we’ll get back to you. More often than not, these meetings yield good results, probably because our case is clear and strong and House Members are responsive to their constituents.

I was originally assigned as support staff for one of the House lobby groups. However, a coworker asked to be included in a group, and so I took on a role of event janitor. I was fine with that, being happy to simply be a part of the day. Despite the custodial assignment, I still decided to wear my nice suit…you know, just in case.

After helping clean up the lunchroom, I started chatting with a coworker, Jess, who mentioned that she had attended a meeting I was unaware of. She told me that before the luncheon, Colleen Connor, a Pennsylvania patient and her family met with one of their state’s senators, Bob Casey, who indicated support for our bill.

To show just how much support, while writing this email today, I got the following message from our director of advocacy:

Gavin [our lobbyist] writes to say that Sen. Casey's staff intends to drop our bill in the Senate today. With luck, I'll have a bill number to announce at the staff meeting tomorrow.

I don't think there's anything I could say that would make a more eloquent "thank you" for each of your contributions to yesterday's event. We just never know when and how our work will pay off...

Jess told me the meeting went so well that Colleen called her doctor in Philadelphia, Darren Taichman—who I had met during PHA’s September PH Resource Network Symposium. Upon hearing the good news, Dr. Taichman said he’d hop on the next train to DC from Philly to be there that afternoon. I was curious why he was taking the time to come down, as the meeting and luncheon had already ended.

I soon found out that he was coming to support a second meeting, to be held at 4pm with the senior Pennsylvania senator, Arlen Specter.

Jess was telling me all this because she was looking for a photographer. I mentioned offhand that I had a camera.

The patient, her supporters, Dr. Taichman, Jess and myself headed for the Senate offices, winding up in Sen. Specter’s conference room. I wasn’t feeling particularly nervous, since I was pretty much along for the ride. All I had to do was ask for a couple of photos, and I was done…no sweat. But a few minutes after we settled down, a staffer ran in saying that all the Senators were just called over to the Capitol Building, and that if we want to meet with Sen. Specter, we’ll have to go and see him out by the Senate floor.

We were each given clearance badges and shepherded down to the basement of the Senate building, where we were told to take the connecting subway to the Capitol building.

Sen. Specter came off the floor and Colleen, surrounded by a dozen people standing in the corner of a noisy room, spent a few minutes with him talking about the disease. Colleen is impressive and after the conversation, Sen. Specter said that he would take a hard look at the bill.

Through all the walking and talking, Jess and I would occasionally look at each other wondering how in the world we became involved in all this. Neither of us play a significant part in PHA’s Congress initiatives in our work. However, it was clear to us that a great deal of progress had been made with these senators yesterday, and we were both able to personally testify to that. Though I began the day a janitor, I shook hands with a senator, and played witness to one of the day’s most remarkable events.

Glad I wore my nice suit.

Score one for the little guy...

Lately, we've been used to seeing stories about various countries where governments have been trying to save money by reducing the availability of PH treatments.  Usually, the PH associations in those countries have fought back, often successfully.

This morning I saw a real eye-opener...

The Bulgaria Commission for Protection against Discrimination has imposed a BGN 250 fine on former Health Minister Evgeni Zhelev for failing to make treatments available to 30 idiopathic PAH patients.  My handy Google currency calculater tells me that's only $190 but it is a powerful message to his successors.  It is also a testament to the work of the Bulgarian rare disease groups that lodged the complaint.


For more on this story read the article
For more on the work of PHA's international partners, visit our site.

Tuesday, November 17, 2009

Thanks Debbie...and Charlotte and Robert and Jeanette, Dave & Lisa

On Friday, I was flying back from my second trip to California in two weeks.  I missed our Friday staff meeting and Debbie missed commenting during the Testimonials agenda item that opens all our meetings.  The note she sent to all our staff becomes today's blog.

Here at PHA we hear about and see so much that people do in the fight against PH.  The items Debbie told us about in her note offer a recent snapshot of the activity that inspires our work.

Thanks Debbie. I'm glad to share your post...

When it came to testimonials and memorials today, I was quiet (for once!) I’ve been so caught up with web work, that I completely forgot about these amazing stories!

I wrote them up, apologies for typos. And ENJOY!

- Debbie


[starting up the Puyallup Support Group,] was a rocky start Debbie, and all in all, it’s been a great and very productive year. I’ve learned a lot about who I am as I live with PH, and that I can still do what I love to do…be a leader, a teacher, and promote health and wellness. Thank you and Deb Martin for asking me to do this. I said ‘yes’, and got my life back. Bless you both.

--Charlotte McCabe, Puyallup Leader

Robert Ngo Educates 100 pre-med students

PH patient, Robert Ngo graduated at Western University of Health Sciences in Southern California and became a pharmacist but went “back to school” for Awareness Month! On November 16, he’s promoting PH medical education as a special guest lecturer for a lunchtime series drawing 100 future health care providers at his alma matter.

In addition, Robert is inspiring to other patients as he is an avid SCUBA diver, marathoner and overall athlete. In spite his PH, he is able to participate in the “IronMan 70.3” in Orlando, Florida on May of 2010!

If you didn’t know, an Ironman Triathlon is one of a series of long-distance triathlon races consisting of a 2.4 miles swim, a 112 miles bike ride, and a marathon (26 mile run) raced in that order and without a break…


Every EMS technician and first responder in the state of Maine knows about PH!

…well those who read the “Journal of Maine EMS”… thanks to a patient advocates and caregivers. Jeanette Morrill and husband caregiver Dave, worked with writers of the Journal to get PH medical information published in this quarterly newsletter distributed to the Maine Emergency Nurses Association, the Regional EMS Councils, Maine Chapter of the American College of Emergency Physicians, Maine Committee on Trauma, Maine Ambulance Association and Maine EMS, and virtually to all EMS personnel in the state.

According to Jeanette, EMTs in the state are most likely to read and study the journal because they can get recertification credits. She believes that the main reason the EMS journal published their story was because of PH caregiver and advocate Lisa Sessions, who secured a PH Awareness Month proclamation by the Governor of Maine.

Cheers to Jeanette, Dave, Lisa and for PHA Medical Services and Advocacy and Awareness for this victory.

Here are the PHA resources of which the journal writers utilized, in writing their article:


• Pulmonary Hypertension Awareness Month Proclamation, John E. Baldacci, Governor, State of Maine, July 9,2009 .

• Emergency 101 Information for Emergency Medical Providers, Pulmonary Hypertension Association.

• Pulmonary Hypertension, A Patient's Survival Guide, 3rd edition, Gail Boyer Hayes, Pulmonary Hypertension Association, 2004.

• Pulmonary Hypertension Association website:

Sunday, November 15, 2009

Visiting friends...

Steve White is a PHA board member. He"s also an Episcopal priest just back from a trip to Israel.  Here's part of his note on his visit with our friends from PHA Israel.  I think it gives a great view of the importance of international connections.

For more on Steve's connection to PH visit his Virtual Birthday site.

As you know, I met with some of the leaders of PHA-Israel in Tel Aviv this past Wednesday. At the dinner meeting were: Aryeh Cooperman (PHA-Israel C.E.O.), Rochi Cooperman (patient), Miriam Don (patient), Joni Berg (president of PHA-Israel).

Here is a report of that meeting from my notes.

I got to the restaurant earlier than the others. The first to arrive was Miriam Don a New Zealander and a widow who was diagnosed in the U.K. about 3 years ago. She moved permanently to Israel about a year ago. She was active in the PHA in the U.K. and while there developed a celebrity cookbook for patients titled “Miriam’s Marvels”. She was able to get celebrity chefs and some members of royalty to give her recipes without salt and that are simple to fix to make the task of cooking easier for PH patients. The book is distributed by PHA-UK and Miriam would like it to be distributed more widely. If we don’t have anything like this in the USA, we might see about reproducing it here. Of course the measurements would have to be converted from metric.

Aryeh and Rochi Cooperman arrived with Joni Berg. Aryeh was born in Ireland but grew up in Israel. Rochi is a sabra (a native-born Israeli). They have four children. Joni Berg is a native South African and a lawyer who works for the Ministry of Health in Jerusalem. His wife is a PH patient and they have 2 children.

Since Aryeh came on board as the C.E.O. on a part time basis (he is also a teacher) the organization has become more productive with materials to help patients and families. They have had several social events that have built the community and have helped raise money.

Aryeh showed me a video they produced (in Hebrew with English subtitles) and gave me copies of the DVD. It is alsoon YouTube, titled Israeli Association for PH. He also showed me a DVD on living with Flolan which is designed to make patients feel hopeful and positive. The group has also worked on excellent print media and is designing a new web site which should be up soon. I will send all the materials he gave me to Christine.

Joni Berg told me how they have been successful in getting medications and services needed by PH patients included in the so-called “basket of health services” provided to each Israeli by the government.

Some of other issues we discussed:

Recruiting new patients to the organization – I suggested getting pharma companies to allow them to place a PHA brochure in shipments of meds to patients. They had not thought of this idea and said they would try it. If we have other ideas, they would like to hear them.

There is a great need for portable oxygen concentrators that could be loaned out to patients who are housebound and need to make medical appointments or even go on holiday. The units cost about $5,000 each and Aryeh said they would like to have 2 or 3 on hand.

They need a list of medications that PH patients cannot take due to drug interactions. Do we have such a list?

Everyone expressed an interest in getting more doctors involved in PHA-Israel. Any help we can give them on how to get referrals to PHA from doctors and how to involve doctors in the organization would be helpful to them.

They would like to know the conditions under which they might be able to use content from our print media and web site for use in Israel. They are especially interested in translating the Patient’s Handbook into Hebrew. Perhaps Christine could clarify this for them. They do not get Pathlight and we might consider sending copies to our international partners.

A major challenge for them concerns how to get support groups to meet since they have so few patients spread all over the country. Until they have enough patients to establish local support groups, patients have to travel long distances at great expense and funding is needed for this.

I encouraged them to come to Conference in California. Joni was in Houston last year and attested to how helpful Conference can be for patients and caregivers. However, the long flight will require oxygen for patients who have trouble breathing.

I had a real sense that these five people regard their efforts as part of a life and death struggle that touches them directly and personally, as indeed it is (Joni’s wife is a patient, Miriam and Rochi are patients). They are incredibly dedicated and creative and I hope we can continue to support them. It seemed to mean a great deal to them that a PHA Board Member from the States took the time to be with them. It was a humbling experience for me to spend an evening with these wonderful people.

Learn more about the 50 PH Associations worldwide at PHA's International Website.

Wednesday, November 11, 2009

East Coast, West Coast ping pong...

It's been tough to blog lately.

Last Thursday, I left the American College of Chest Physicians.  It was long days there, starting with Satellite Sessions at 6:00am each day and going through evening meetings that generally went until 9 or 10:00pm.  There was a grerat deal about PH there but little time to blog. 

Northy Carolina was my next stop for the University of North Carolina/Duke PH Symposium on Friday.  Speakers included Dr. Ford from UNC, Dr. Tapson from Duke and Dr. McLaughlin from U of Michigan.  Over 100 physicians attended the standing room only event.  I had a chance to speak to more than 50 patients and then headed out to the airport with a sense that this event will have a long and growing future.

On Saturday, I was at the Second Baltimore Walk for PH which had over 125 registered.  Drs. Hassoun and Girgis were among the speakers and I renewed aquaintances with a lot of families.

Monday was catchup at the  office and today I  just got back to San Francisco where I started a little more than a week ago.  Tomorrow Drs.McLaughlin, Badesch, Bull and myself will be presenting our plans for the second year of our med ed program to two potential sponsors.

It's time to head out for a working dinner, soo I'll sign off.

As always on these trips, I've met so many committed and interesting  people.  It's a disappointment to me that I haven't had the time to tell their stories in this week's blogs.

But getting back to that is my goal.  Let's see how quickly I can make that happen.

Wednesday, November 4, 2009

still too often...

In the  last issue of Pathlight, our Board Chair, Carl Hicks, wrote about his visit with Sharon Wilson and her family. We got word yesterday of her passing.  We mourn with her family.  We mourn for her and for all the good people we continue to lose to this terrible disease.  They drive us forward fo the day when we can truly say, "no more".

Here is a reprint of Carl's article.

Those of you who have heard me speak have heard me sometimes refer to this journey we are on as the “Trail of Tears.” I am quick to point out that along this route all of us seem to experience both tears of sadness as well as tears of joy. Yesterday I spent some time with a remarkable family I met on the trail. Both kinds of tears flowed for better than an hour.

Sharon and David Wilson, of Bellevue, Wash., live in a modest home with their sons Michael and Matt. A typical all-American family on the surface, David is now retired. Sharon has given up a promising career and a life of service as a teacher just prior to attaining her lifelong goal of a principal’s position. What makes this couple different is that David, a non-smoker, is stricken with lung cancer, while Sharon is now completely bedridden with pulmonary hypertension. And, the day prior to my visit, Sharon had just written a check for $200,000 to PHA. Through her generous donation to PHA, Sharon has accomplished her dream of helping others within her own lifetime.

As we all visited in Sharon’s bedroom, I ached inside for what surrounded me. Then Sharon would smile a really pretty smile and tell me how much she had enjoyed her chosen work of teaching and mentoring the kids in her classes. She has been able to give something to her school, and we cried tears of happiness together. The unfairness of what had struck their family and the inevitable “Why me?” question led to more tears of sadness. We all had a chuckle when I had to ask Michael, the youngest of the two boys, his age after hearing him recount several years of service in the Navy. “He’s just a babyface” the rest of the family chimed in unison as if they’d answered that question dozens of times. I shed a few tears of happiness at the closeness of this family because I knew they would need it to help each other out. I did my very best to thank Sharon and her family on behalf of all of us for her selfless act of kindness with her magnificent gift. As I tried to explain how her dollars, designated for research, would someday help to alleviate the suffering for untold numbers of people of all ages stricken with this illness, we cried more tears of both joy for those she would help save and sadness for those she couldn’t.

Leaving, I tried to get a promise from her that she wouldn’t go anywhere prior to our celebrating her birthday on September 26. She smiled again, a beautiful smile of peace that suggested now, especially after the tremendously kind acts of the past few days, her work here was nearly done. The tears came again for me as I pondered that, hugged her goodbye and headed for home.

The “Sharon Wilson Pulmonary Hypertension Research Fund” has been constituted at PHA. Every penny of Sharon’s contribution will go to research for the cure.

Tuesday, November 3, 2009

Constant motion...

Monday was my second day at the American College of Chest Physicians (CHEST) meeting.

CHEST is about one-third the size of the larger American Thoracic Society meeting but, with about 4,500 registrants, there's still a lot of activity...and much of it relates to PH.

Because so many of the people we work with come to this meeting, it's also a place for us to do PHA's own business.

At 7:30am, Dr. Channick, editor of PHA's medical journal, Advances in Pulmonary Hypertension, met with his editorial team to plan upcoming issues of the publication. Topics include Transplant and Living with PH. An interesting discussion took place as the editors considered an article looking at PH through the experiences of physicians around the world.

I had a chance to visit PHA's exhibit booth staffed by Sherrie, Donica and Christa before our noon Corporate Committee meeting. This year, the booth features a video from Dr. Bob Frantz who led the development of PHA's new medical website, PHA Online University (more about that in another blog).

PHA's Corporate Committee has 14 member companies. This meeeting was called to discuss three items, supporting Dr. Benza and Frantz's upcoming Kilimanjaro Climb to benefit PHA's research and patient-serving program,supporting the Conference scholarship programs and reviewing PHA's support group guidelines and activities. With about a dozen members and three physicians in the room and another 5 or 6 participating via conference call, the discussions brought in many perspectives and, I believe will generate valuable outcomes.

The CHEST sessions today were a rich mix of pH education and information and, from the ones I was able to observe, all seemed well attended. The day closed with a United therapeutics discussion of progress in patient-focused care and the debut of a video that included interviews with many of the doctors and patients we work with, as well as PHA itself.

Monday, November 2, 2009

A gathering...

After leaving Stanford on Sunday afternoon, I flew to San Diego for the annual meeting of the American College of Chest Physicians.  PHA hosts a heavily trafficked exhibit booth here each year.  We also have many side meetings.  Last night, our board chair-elect, Laura D’Anna and I had the opportunity to attend Gilead’s Research Award dinner.  This is the second year of the program and it was great to see it continue to grow with new support awards being presented to PH researchers.  On Wednesday, I will be attending a similar awards event for new Actelion research awards grantees.  Every year we are seeing the opportunities expand.  It is a true joy.
As I type this, I’m sitting in a morning symposium (if you can call 6:00am to 7:30am morning) titled Pulmonary Arterial Hypertension: Translating Evidence into Cases.  The PH programming is continuous here from early morning to late evening.  Given the numbers of PH patients compared to much larger conditions such as COPD, like other areas of our work, PH has achieved a presence far beyond our numbers.  This is happening because of the work of our physicians and researchers.  Their rapid progress is driving the extraordinary interest we are seeing here and at American Thoracic Society and other meetings.

What a difference 9 years makes…

When I flew into San Francisco on Saturday, the city was covered in a grey fog.

This morning the sun was shining in Palo Alto. The 9th Annual Stanford Race Against PH would have a great day! 

I got to the campus an hour before the start. Besides being a beautiful place, it’s the home of the Vera Moulton Wall PH Center. Under the former leadership of Dr. Ramona Doyle and now, her successor, Dr. Roham Zamanian, this event has grown to be the largest PH event in a fast-growing constellation of PH events.

Two years ago, when I last attended there were 1,000 walkers and runners. This year they topped 1,500!
It wasn’t always like that…

About a decade ago, I was sitting at my desk. I got a phone call from a young man who was engaged to Katie WEwing, the daughter of a PH patient. Our staff at the time was a couple of part-timers and I. Eddie Davis wanted to start a walk at Stanford and wondered how we could help. I’m afraid we didn’t do much for him…but he did a great deal for us. His questions helped us understand how to create future support and guidelines. I saw him – and the entire Ewing family – at this year’s walk. We spoke about that first year and the 120 who came that fist year. For me, it’s another in the continuing proofs that all good things start with an idea and someone willing to give them a try.

One of the nicer moments in a great day was at the race start. Dennis Hernandez, a PH patient at Stanford, was asked to come to the mic and countdown to the start. Once he was on the stage, he was surprised with the first Patient of the Year award. It was a very moving moment. From what I heard before this surprise moment, he has been a real gift to the PH community at Stanford – visiting with new patients regularly and helping them understand what is going on in their lives.

Rita Orth, a patient and PHA board member led a team of folks circulating through the crowd gathering signatures on a petition asking Senator Feinstein to introduce the PH Research and Education Act in the Senate. The response was fantastic.

There are so many people who are responsible when an event like this grows. I can’t name them all but Kristi Kerivan is one who can’t be overlooked. She’s been a consistent force in the event’s growth and I’m sure she’s already working on next year’s 10th anniversary event.

Take a look at some pictures from the 2009 Stanford Race here.

On the road again…

This morning I began a week-long series of activities that is taking me from the Stanford Race Against PH in Palo Alto to San Diego for the American College of Chest Physicians to North Carolina for the University of North  Carolina/Duke PH Symposium and then back home for the Baltimore PH Fun Walk.
I’ve been feeling a bit guilty about my diminished blogging since the PHA board meetings a couple of weeks ago.  I’ve been sandwiched between catch-ups from that and preparations for the upcoming week of meetings and events in four cities.
My goal has been at least four blogs per week and I’m psyched to get back to it.  I’m also looking forward to a busy and productive week and will try to blog from each event.

Thursday, October 29, 2009

A Philly Story...

I got home a little while ago and am enjoying the Yankees 8th inning lead over the Philadelphia Phillies in Game 2 of the World Series.  After all, the Yanks have been my heroes since I was a kid growing up in the Bronx.

But I find myself thinking about another hero...a dad from the City of Brotherly Love..

Earlier today, I was at my desk when the phone rang.  When I answered, the man on the other end started with,
"I made a donation this year and I just wanted to let you know that I'll be making another one next year."
He seemed pretty upbeat and, after I thanked him, we chatted a bit.  Like so many of the people I'm privileged to talk to, he was an extraordinary person with an extraordinary story.
"My son had two transplants this year.  His first set of lungs had an infection and he was in real trouble.  Then there was another set of lungs and he was transplanted again.  He's doing great."
His son is 11 and will soon be 12. God bless.

It was a great conversation with an inspiring person.  The intensity of his life appeared to have made him more, nott less.. 

Well, the game's over now and Mariano Rivera closed out the Phillies for my Yankees...but, when it comes to things that matter, I thinnk there's a father in Philadelphia who's the real deal..

Tuesday, October 27, 2009

Bricks and Mortar...

Later today, Adrienne and I will be looking at new space in 801 Roeder Road.

If things work out, we'll be reconsolidating our staff from the 4th and 5th floors to a single site on the 10th.

As we get ready to consider this leap, I find myself thinking about past offices and moves.

In 1999, when I began part-time work to build PHA, our Board's goal was growth to meet the community's needs.  The day I hired an assistant, my wife said it was time for me to go...time leave the home office where I had been so comfortable for the previous six years.  PHA didn't have much money then, so I leased a small office (400 sq. ft.) in Silver Spring, MD.  It was a good spot, within walking distance to Metro, and so a quick ride to Capitol Hill for the legislative work I knew would be coming.

The office itself was not so much.  Besides being small and having cracked floor tiles, I soon found that roaches were our undesireable co-tenants.

It wasn't great but it was what we could afford and it was a place where the work could get started.   Soon we had grown to 5 part-timers.  Since we had only four chairs (and spece for not much more), we rotated staff schedules.  One day, all five of us were in.  I will never forget the site of Michael Vassiliev setting up his laptop on one box and sitting on another one.  You could look at the situation as a mess - or an inspiration.  I think all of us then chose the latter...and we progressed.

In early 2001, I had divested myself of other clients and began working full-time for PHA,  At the same time, with increased funding and board-expanded goals, I was converting the rest of our staff to full time as well.  We moved two blocks north to 1,200 square feet - half a floor - in another small, but I hoped better, building. 

The landlord who ran the building with his children was a legend in Silver Spring.  He was a 90 year-old man who maintained his properties well and had an interest in his tenents, especially folks like us with a social mission.  Soon we were crowding our half floor and expanded to the full floor.  At the same time, the landlord sold the building.  That was a real lesson in the importance of property management for us.

As our workload increased rapidly, our building declined even faster.  Over the next couple of years, we were reduced to keeping a record of our summer (up to 86 degrees) and winter (as low as the 50's)temperatures.  We finally were able to get out of our lease when we reported watrer leakage and mold to our county's environmental department.  At one point, we had counted 34 leak points in our ceiling (we were on the top floor).  After getting dozens of violations, the landlords said, "We want you out."  Our response was, "We're more than anxious to go."

Well, we got through the stresses of those early days without losing our growth trajectory and now we have a decent work space for our staff and expanding intern program.  The only problem is we're full up again and it would be more efficient to have everyone back on a single floor.

In about an hour, we'll see what the future has to offer...

Saturday, October 24, 2009

I, Blog...

It's been a week since PHA's board meetings.

There's been a lot of catchup and followup and I've found that I've blogged a lot less this week than is my intent.  But I have been thinking about a question that Jack Stibbs, a long-time board member and friend, asked after I announced this blog to the board...
"Why do you do it?"
Good question, Jack.  And thanks for asking.

Truth be told, I like to write and blogging is a good format for a busy person.  I feel like I'm accomplishing something in a small chunk of time.  Call it a hobby.

I think there's something larger though.  I live PHA day-in and day out (and often night-in and night-out).  There's a lot I get to see from my perspective as PHA's president. 

Sure's there are the big programs and activities we do and the planning and executing...but I'm talking about something else, something personal and enriching. I often see the adversity in life transformed and elevated by heroic response. 

That happens in the day to day activities, the small things that often pass without being talked about.  A blog, this blog, forces me to focus and observe.

What I'm privileged to see is extraordinary.  It would be a shame not to share.

To read personal stories from the PH community - or to post your own - visit Our Journeys.

Friday, October 23, 2009


What's the old saying?  If the mountain won't come to Mohammed, Mohammed will come to the mountain...

When staff members for both North Carolina Senators - Kay Hagan and  Richard Burr  - said a meeeting with the Senators in the state would be impossible,  North Carolina residents and PH support group members Diane Ramirez, Janet Cecil and Cindy Pickles decided to come to Washington, D.C.

They found out that, starting May of this year, Senator Hagan hosts a Thursday Carolina Coffee hour once a week for her constituents...and last Thursday they were there.  With only one other constituent in the room they had plenty of time to make the Senator aware of the Pulmonary Hypertension and Awareness Act of 2009 from the perspective of 3 PH patients.

After that, they spoke to Senator Burr's staff and then completed the goal that brought them to town. As Diane tells it,
"Our goal has been to meet every member of the House and Senate from North Carolina and tell them about House Bill 1030 - the PH Research and Education Act.  We met that goal on Thursday and now we're following up."
So how are they doing?

Well, after their visits, they came to the PHA Board meeting (Cindy is a member) and briefed us.  That's Diane in the picture.

Then, this morning - a week later - I saw that Representative Patrick McHenry had signed on as a co-sponsor.  I then checked the full list and saw that so have Reps. Jones, Price and Coble.  That's 4 North Carolina Members out of far!

Can people make a difference.  You bet we can and the ladies from North Carolina are proving it.   And so are many others.  Our bill now has 30 co-sponsors - and growing.

Diane went on to tell the PHA Board that,
"Cindy is our support group leader and awhile backshe asked me to help out with advocacy.  I hesitated.  I didn't know what I was doing but I learned.  Now, I'm hooked.  I know we're making a difference."
For more on how you can get involved in making a difference through public adocacy, visit PHA's Advocacy Center.

Wednesday, October 21, 2009

An industry of ignorance...

I usually listen to the radio when I drive home. 

That's what I was doing last night when I heard something disturbing.  A woman was speaking on a talk show.  She spoke about her diagnosis of cancer, rampant throughout her body.  She spoke about her doctor's advice for treatment.  And she spoke about her refusal of the chemotherapy that had been recommended.

Then, she added to the details of her story.  Her doctors told her that she would die without their treatments.  Her children and husband began to fall apart.

And then the conclusion.  She went for some more tests and there was no cancer.  The doctors were wrong.  Declining treatment was right.

And then, the pitch.  Her experience led her to investigate the medical industry and find treatments   She told the interviewer that doctors don't use the miracle treatments she's discovered because they don't want to go through the effort.  Did I mention she's a celebrity and carries the credibility of that status?

I don't know if she's found miracles or not but I do think she may be part of a growing industry.  It's an industry based on the rejection of scientific evidence and clinical trials in favor of intuition.

We see people like her on TV with their infomercials every day.  They play to people's understandable need for hope.  It is cynical and it is dangerous.

A decade ago, the godmother to both my children was fighting her second battle with cancer.  She was well educated medically, serving as a VP of Nursing and Chief Operating Officer at various hospitals.  She was also looking for hope.  She found a doctor in Nevada who was working with "alternative therapies".  She was looking at other alternatives in Mexico just before her friends and family arranged her final emergency flight home.

I write about this on a PHA blog because our community is not immune to these issues.  I'm grateful that we work with doctors who work from proven evidence.  Recently they have provided us with a statement and fact sheet on stem cell therapy.  They are both well worth reading.

Thursday, October 15, 2009

Here, there and everywhere...

It was nice to see Wendy Bockhorst post a comment today on my Dorothy O. blog .  Wendy has organized golf tournaments in Arizona for the cause - and this year has a Cure PH Casino Night coming up.

I remembered it's scheduled for early November and went to the calendar to check the exact date.

I was amazed...

There it was, November 7, Arizona Cure PH Casino Night. OK, Phoenix is covered.  The surprise is that it was one of FOUR events listed for Nov. 7.  There's also the Baltimore PH Walk for Hope 2009, the Travis County PHun Walk and the PHA St. Louis Dinner/Wine Tasting Event.  From Phoenix to Austin, Baltimore to St. Louis, it looks like we've got the country covered on that day!

We may not be a huge community but we sure are a strong and committed one.  It's this kind of spirit that is bringing us success beyond our numbers.

To learn more about Wendy's event, all the Nov. 7 events, all the Awareness Month events and all the scheduled upcoming PH events (whew, that's a mouthful), visit the PHA Calendar

Wednesday, October 14, 2009

Dorothy O...

I had a call from Dorothy Olson the other day.  It had been awhile since we last spoke and it got me thinking about who she is as a person and the impact she has made...

In 1978, Dorothy Olson was diagnosed with what was then an almost unheard of disease, pulmonary hypertension.

This was two years before the first and only NIH registry (database) of the disease was launched and seven years before it reached its conclusion…ultimately identifying a total of 187 PH patients throughout the U.S.

In that environment, Dorothy reached out for nine years. She wrote to doctors; she wrote to NIH; she wrote to the National Organization for Rare Diseases. Her constant goal was to find other patients, to end her own and their isolation. In 1987, her persistence paid off. She located and began to work with two others. Their goal was to form a patients’ organization. By 1990 a newsletter – which Dorothy christened Pathlight – was begun. 

I met Dorothy when I was hired as PHA’s first staff person in January of 1999. She was still active as a board member and volunteer in many, many ways. I remember her saying to me,
“I may have lost my sight but I can still talk on the phone. Use me.”
Dorothy is a regular volunteer on PHA’s Patient to Patient Telephone Helpline. One story I think illustrates the personal level at which she works. One night, some years back, she received a helpline call from a young woman who had just received her diagnosis of pulmonary hypertension. The doctor – as many physicians inexperienced in the field did and some continue to do – told her she had six months to live…and gave her our brochure.

The young woman rode down the elevator with her father, both of them devastated, and called the helpline from the parking lot. Dorothy was able to tell her she was talking to a more than 25 year survivor who had been given the same message.

It made all the difference.

Tuesday, October 13, 2009

A great way to start the day...

When I was at the Long Island Fun Walk (see Oct. 5 blog), I met the Peek family.  Like the many other kids at the event, their daughter, Sarah, was running all over the place and having a great time.

Late last night, I got a note and some photos from Sarah's mom, Michelle.
...We were so excited to be able to attend the walk this year! We look forward to coming back again! We are so thankful for PHA and our PH specialist Dr. Erika Berman. Sarah was given 6 months or less to live 4 years ago when she was diagnosed. Flolan has been a miracle and she is a joy and is full of life! I know someday we will find a cure!

God bless all of you who make a difference.
There's not much to add to that, except it sure did make it easier to get out of bed this morning.

Oh...and to say, I really loved the family T-shirt.  One Family, One Walk, One Cause, One Cure.  What a great sentiment!

Monday, October 12, 2009

Path to a Cure...

February 19th to 25th.

Those are the days that Drs. Ray Benza (Allegheny Hospital, Pittsburgh) and Bob Frantz (Mayo Clinic, Rochester, MN) will be climbing Mt. Kilimanjaro.  Their goal: to raise $100,000 for PHA research and patient-serving programs.

Today, with seven staff, we had a run through on ways we'll be able to help.  Jess McKearin reported the web pages are up, as are the donation page and the Unity Walk page.  

Our goal for the Unity Walks is to have 25 walks around the U.S. in support and coordination with Dr. Frantz' and Dr. Benza's climb. Besides helping to meet their fundraising goal, the Unity Walks will raise awareness of PH in communities around the U.S.

It was a pretty exciting get together, as we added more and more ideas.  Soon, word will be out to our entire community - and beyond.  I guess inspiration breeds inspiration...and we are all inspired by what these two doctors are doing to support our common cause.

Some years ago, a doctor told me not to expect much from doctors financially.  He said that his peers saw what they did with their patients every day as their contribution.  It made sense, I guess, but that's not the way it is at PHA...and our community is strengthened by that.

Friday, October 9, 2009

Keeping our values straight...

On Thursday, our Scholarship Committee had their first meeting to plan for Conference 2010.  Their job is to review applications and make awards so that as many patients as possible can attend the International Conference.  Our job as staff is to raise the resources so this goal can be met.

At our 2004 Conference, a medical director from one of the pharmaceuticals said to me,
You know, your challenge as this meeting continues to grow, will be to make sure the patients aren't left out.  The doctors and nurses will continue to come.  the companies will continue to come.  It's the patients' role that has to be protected.
That was followed by a board review at the end of the Conference, where Pat Paton, one of our founders said:
“While we’re congratulating ourselves on another great meeting, we shouldn’t forget that we were founded for patients.  We have to challenge ourselves to grow their participation.”

Wereally took those messages to heart.  The last two Conferences saw a great growth in scholarships.  The commitments rose from $55,000 to $160,000.  That's the largest conference scholarship program any of us are aware of...and in a disease with a population measured in the low tens of thousands, not in millions.

Well, we've started raising funds again and Pfizer and Actelion have both funded Community of Hope scholarships.  Our members are stepping forward, with the Barbara Smith Endowment, the Michelle Carr Memorial and the Mason Hoffman Fund already in place.  I know more will come..and there's one that I'm particularly proud of.

Our staff decided that they want to participate as a team at the Baltimore Fun Walk on November 7.  Seventeen have signed up and, with the permission of the event organizers, they decided to target the funds they raise to Conference scholarships.

Go Team PHA!

Thursday, October 8, 2009

Words of value...

To present an important idea simply and clearly is a great gift...and something to be shared.  Among the worthy words I heard this week are these two quotes presented in videos at the Lantos Award ceremony on Tuesday.

The aim of society must be the compassionate betterment of all human beings.
                                                        The Dalai Lama

We must remember that the veneer of civilization is paper thin.  We are its guardians...and we must never rest.
                                                  Tom Lantos

Wednesday, October 7, 2009

This is democracy...

Katie Kroner, our Advocacy and Awarenss Director and I  took a trip to Capitol Hill today to support the Scleroderma Foundation as they held their first Congressional Luncheon.  The bonus for me was that it was held in the Jefferson Library of Congress Building, a beautiful structure, which I had never visited before.

Due to the connection between PH and Scleroderma, our partnership with the Foundation has been good over the years.  I was glad to be able to congratulate Robert Riggs as their new President and to see a number of leaders I've gotten to know from various meetings over the years.  It was fun to hear frrom Dr. Furst, a UCLA rheumatologist that his wife Elaine - a former SF board chair who I've known for years - is now doing TV and movie acting.

Rep. Lois Capps - a leader on both PHA's and the Scleroderma Foundation's bill made the take-away point of the day for me when she said,
"Your stories are the reason we will ultimately pass your legislation...This is democracy...Tell your stories."

Rep. Capps is a nurse as well as a Congresswoman and had addressed about 100 PH Resource Network nurses at their Lobby Day on September 24.  I missed that, attending our Scientific Leadership Council meeting that same day.  It was good to hear her on target message today.

We'll miss PHA's Johnny Appleseed...

Like a thunderbolt.

That's how it feels sometimes.  Yesterday, I was sitting at my desk working  on some projects and I spotted a message.  Then another.  Penny Engel passed on Monday night.

I hadn't spoken to her for awhile.  While I had been aware she was having health issues, I didn't know how serious things had gotten for her.

I'll always remember Penny as the Johnny Appleseed of Florida.   She was always looking for ways to help patients and ramp up the fight against PH.  First it was the printer cartridge recycling business she and her husband, David, started out of their home.  She contacted us to say she wanted to give a portion of the profits to PHA.   By the time I met her at the 2002 PHA Conference in California, she had begun traveling the state and forming new support groups.  She would go into one area after another, talking to people, encouraging them and often leaving behind a new group. Later joined by the efforts of Gail Bucci, they grew the Florida support group network from one to ten groups.

Good bye, old friend, we'll miss your caring and dedication...we'll miss you.

Tuesday, October 6, 2009

A sense of responsibility...

How things get intertwined...

The late Tom Lantos - U.S. Congress member and Chair of the House Foreign Relations Committee - was a great friend to the PH community.  After he died in February 2008, the Tom Lantos Foundation for Human Rights and Justice was formed to continue his legacy.

Our Washington Counsel, Gavin Lindberg and I were honored to be invited to Capitol Hill to attend today's award ceremony for the first Tom Lantos Human Rights Prize.  The honoree was the Dalai Lama.  Speakers included Sen. John McCain and Rep. Nancy Pelosi.

In a video before the Dalai Lama received the prize, he was quoted as saying:
Unless each individual develops a sense of responsibility,
the whole community cannot move forward.

I find that a striking thought, one that succinctly describes the reason PHA's success despite the relatively small size of our community

So how do things get intertwined?

Monday, October 5, 2009

The Children's Garden...

Some things just make you smile...

On Friday, I was checking my mailbox when one of our staff said, "Look at this".  She was pulling a book out of an envelope.  It was a children's book written by two children, Ankoor and Abhinav Talwar.

Their father, Arunabh Talwar, MD, had sent it along.  He is a pulmonologist working in PH at North Shore Long Island Jewish Health System and has been a speaker at the Long Island PH support group.

I don't get much time to read children's books these days but I really did enjoy this story of village children and their special place...and the garden's owner who closed the gates, at least for awhile.   The illustrations by Susnata Chatterjee were terrific.

So why am I writing about a children's book?  Well, really, I'm writing about another striking demonstration of generosity of spirit.  The Talwar children decided to donate the proceeds from their book to PHA.  Thank you Ankoor and Abhinav!

If you'd like to order a copy, you can find it at Amazon at

God smiled...

This weekend, I finally got to go to the Long Island Fun Walk for PH.  It was the fifth year that group leaders Joanne Schmidt and Mary Bartlett had organized the event.  It has grown considerably from it's first year...last year $70,000 was raised for PH research.

With rain forecast, there was some doubt how and whether the walk would take place.  Indeed, the 11:00am opening of registration at Eisenhower Park in East Meadow was preceded by thunderstorms and a couple of hors after the close, my daughter, Nina, and I were driving through flooding on the Belt Parkway in Brooklyn.  During the event, though, all was dry and a great crowd, numbering over 300 turned out.  Family teams wore T-shirts in honor or in memory of loved ones.  Lots of volunteers, including PHA's Jess McKearin and her husband John, worked the registration and information booths.  One team had raised $10,000 in sponsorships and donations for PH research, another $6,000 and on and on.  The spirit was great with kids running around all over the place. There was a board posted with pictures of friends and relatives who had passed.

Sunday, October 4, 2009

Always have hope...

Three days befor her September 12 Painting a Stroke of Phenomenal Hope event seventeen year old Lauren Johnson was interviewed on her local Fox TV station.  Lauren's mom, Melissa, sent a link to the video

I was struck how well Lauren did in the interview.  At the end, the interviewer asked her how she dealt with her PH.  Lauren, who was diagnosed at age 3, said, "Always have hope."

When I landed in Oklahoma City, I had a note from Melissa.  Lauren was in the hospital with a line infection.  After all that work, no one was sure whether she could attend!  By the time I got to Edmond on Saturday, the word was out.  Lauren was coming on a four hour pass!

Friday, October 2, 2009

Symposium 2009: learning & building...

In 2003, PHA hosted our first Symposium for nurses and other allied health professionals.  Sixty or so attended a well-received program.  Wind the clock forward to September 24-26, 2009...

Last week, about 400 allied health professionals came from throughout the U.S. and as far away as the U.K., Ireland and South Korea to hear 68  faculty and speakers provide top-level education and motivation for those working in the field.  It was a great 3 days and, as we start to sort through the evaluations, the question always comes up...did the meetings have an impact?

What we're hearing informally and through the evaluations is giving us a strongly positive answer.

After hearing Dr. Keith Swetz' (Mayo) plenary presentation on the Role of Supportive Care and Palliative Medicine in the Care of PAH Patients, one registrant wrote, “Because of Dr. Keith Swetz’s session on Palliative Care, we have decided to make this concept a part of our pulmonary rehab comprehensive education program.”

.Many of the sessions drew positive comments, including this one, “The Physiology of Left and Right Heart Disease with Mickie Gilbert and Dr. James Tarver was fun, funny and presented lots of complex material in a way easy to understand. Mickie did a great job. This session alone was worth the cost of hotel and flight.”

A well-appreciated session was Caring for the Caregiver by PHA Board Member, Steve White: “Rev. White’s ‘Caring for the Caregiver’ session gave me permission to have lunch without guilt, vacation and other days off without guilt. His tip to take ‘ten minutes away from everything’ was advice I needed to hear. Now I must fit those 10 minutes into a new plan for my own well-being. Thank you, Rev. White!”

Since last week's Conference, PH Resource Network's volunteer base has seen a real jump in committee memberships...another great advantage of bringing the community together.

The PH Resource Network leadership, especially the Symposium Committee, did a great job providing valuable information and building the value of their important structure within PHA.  Their work is a benefit to our entire community in the fight against PH.