Thursday, June 30, 2011

The meaning of events...

The First Annual Power for PH PHun Walk for a Cure from PHAssociation on Vimeo.

Last month, Jill Glenn called to say she was going to The First Annual Power for PH PHun Walk in Edison, N.J.

Jill is president of Glenn and Glenn Productions - producers of our Kilimanjaro Climb (2nd video on linked  page) and Lil Long videos - and a good friend and member of PHA.  Besides walking and raising funds for PH in her own community, Jill asked if we thought it would be ok if she and her team made a pro bono video of the event.

I know the quality of Jill's work and was excited.  Glenn and Glenn are great listeners and their fiilms go beyond pretty shots to capture the meaning of what our community does.

So, the video is ready and here it is.  I know how I feel about it...Jill and Doug and their team have taken the story of one event and presented a picture of why people do what they do across our entire community.   What do you think?

Thursday, June 23, 2011

Global partnerships...greater strength and knowledge for us all

Several months ago, PHA announced the U.S. and international recipients of PHA's 2011 Tom Lantos Innovation in Community Service AwardsPH Israel was one of the awardees.  Here is a note from Dr. Yosef  Gotlieb to PHA's Senior vice president, Adrienne Dern, on the outcome of their project.

Dear Adrienne,

It is with pleasure that I am writing to let you know that the conference sponsored by the Israel Pulmonary Hypertension Association on Thursday, June 16th was a resounding success.

Nearly a hundred participants came to the meeting on "Pulmonary Hypertension: Profile of the Disease" to hear Israel's top experts lecture on the various aspects of PH:   symptomatology, typology, diagnostics, therapies, and research horizons for treatment and diagnosis. The number of those in attendance was high despite a doctor's strike which required many senior physicians to substitute for younger doctors in the clinics and wards. Despite this, the auditorium was packed and we found ourselves having to add chairs throughout the first two sessions.

A panel on the complexity of care included a family physician, a mental health and support group worker, the director of a pulmonary rehabilitation unit at a children's hospital. a medical technology professional, and myself representing the patient's perspective. A vigorous dialogue ensued between pulmonary specialists and primary care physicians. The session ended with the promise of continuing exchange and engagement; as this was a major goal of the conference, we were very pleased to see this take place. We, the organizers and the participants who provided feedback, left the conference with the feeling that that the Israel PH community had been significantly expanded and strengthened by the conference and that there would be continuing impact on the target group we had sought to influence, namely, the primary care community.

Of those who attended the event, which was conducted in a decorous setting at a seafront Tel Aviv hotel, most were clinicians (physicians and nurses); a number of professors and heads of departments were also present. We have documented the meeting (some of the initial photos are attached) in stills and video and look forward to sharing our experience with other PH associations. We have already begun discussing possibilities for the next event to be held in what we hope will be a continuing series of meetings focused on professional and patient education.
On behalf of the Israel Pulmonary Hypertension Associationand myself, I want to reiterate how grateful we are to the sponsors of Tom Lantos Innovation in Community Service Awards and to Representative Lantos' family for enabling us to hold the event. Further, I wish to express again our gratitude to you and the Pulmonary Hypertension Association for facilitating our receipt of the funding necessary to implement this project.

We are much inspired and encouraged by the Pulmonary Hypertension Association. May you and the Association go from strength to strength.

Truly yours,


Yosef Gotlieb, PhD

There's a lot more to read about the gvibrant and growing global PH community in the International section of PHA's website!

Friday, June 3, 2011

Ten Years Ago Today ...

I met Bill and Laura O'Donnell and their daughter Shannon six or seven years ago when they volunteered to help staff a PHA table at an event at Tufts Medical School.  Over the years our paths have crossed at PHA conferences and various Boston events and I've followed the family's activities through their support group, telephone support line, mentoring and other leadership and volunteer activities.

Yesterday, Bill posted an essay to the PHA support group leader list serv marking the tenth anniversary of Shanon's diagnosis with pulmonary hypertension.  He titled it Ten Years Ago Today. I found it inspiring and, with Bill's permission, am sharing it with you.

Godspeed and thank you to the O'Donnell's.
For many Americans 2001 will always be memorable year. This goes for me as well. Most Americans will remember 2001 because of the tragic events of September 11. The day that makes 2001 memorable for me is May 31. May 31 is the day the world stood still and Shannon was diagnosed with Primary Pulmonary Hypertension. It is a day that changed life for Shannon, Laura and I forever.

Shortly after diagnosis, Shannon started on a continuous intravenous medication called Flolan. I believe Flolan saved Shannon’s life. In 2001 it was the only medication approved by the FDA for the treatment of PH. Today there are over ten medications. Flolan has to be kept cold. It only has a half life of three minutes which meant any interruption could cause a PH episode. About two years ago she switched to Remodulin, which has a half life of 3 hours making it safer. It used the same pump and does not need to be kept cold. In April 2011 she switched from her original pump, CADD, to a Chrono 5 pump. The Chrono 5 pump is much smaller and lighter pump. She is also on several oral medications. Doctors believe combination therapy may be the best treatment available. I still hope and pray for a cure other than a double lung transplant.

How do you represent ten years? To some ten years is a decade. To others it is a half score. To me ten years is represented by three thousand two hundred eighty five mixes of life saving medicine. (8 years of Flolan, 2 years of Remodulin) This includes 2080 AA batteries, 3285 cassettes, 6570 needles and syringes, 32,850 alcohol wipes, and 328,500 ml of diluent which is equivalent to 164 two liter bottles of tonic or 87 gallons of milk. The average mix takes about twenty minutes which means 65700 minutes or 1095 hours or 46 days have been spent just mixing medicine. This does not include other time required for Shannon’s care.

During the past ten years, we have welcomed one member into our immediate family, Matthew, and many into our extended family. Sadly we have also said good-bye to several family members including Anna, Alice, Anita and Marion (four out of five of Shannon’s grandmothers), Grandfather (Ray), Uncle Tommy, Aunt Barbara and Uncle Jim.

Over the past ten years we have personally witnessed the best in humanity. On a large scale Shannon was granted a Make-A-Wish trip. She trained dolphins and fed Shamu. We stayed a special resort called Give Kids the World which was founded specifically as a place to stay for kids fulfilling their wish to the Orlando area of Florida. Shannon has also been blessed to be a camper at The Hole in the Wall Gang Camp, THITWGC, founded by Mr. Paul Newman. Paul’s vision was to provide a place where seriously ill children could be kids and raise a little hell. This summer will be Shannon’s eighth and final year. She is already talking about being a counselor.

We have attended countless shows through the generosity of others. These include performances by the Boston Ballet and the play Wicked, which Shannon loved so much she downloaded the sound track the very next day. We also attended several sporting events and met several Boston sports stars including Jason Varitek, Josh Beckett, Tim Wakefield, Big Papi (David Ortiz), and Raymond Borque.

I have attended more concerts in the past few years than the rest of my life combined. It started out with The Cheetah Girls with Ali & AJ. Next was the Jonas Brothers, my ears are still ringing from the sound 18,000 girls screaming at the top of their lungs in the Garden. This includes Shannon; you would never know she has a lung disease if you heard her scream. Just to change things up we attended a DropKick Murphys concert after Shannon filmed a public service announcement for Children’s Hospital with Ken Casey and Scruffy of the band. Honor Society was next. Most recently Shannon and I attended a Ke$ha concert at Babson College which was a standing room concert. We arrived early and wound up in the second row. We lasted two songs before I made Shannon and her friend move to the back. Although I joke about the screaming girls at the Jonas Brothers and all but being crushed at Ke$ha I will cherish the memories forever! At times I even feel sorry for dads who never have these experiences with their daughters.

This outpouring of generosity to us only makes us want to give back to the community. We have shown our appreciation and support to Children’s Hospital by raising money through its Miles for Miracles program, allowing Shannon’s image and words to be used to promote the hospital and perhaps most importantly donating blood, something everyone should do, to help patients in need. The staff of THITWGC knows all they have to do is call and if we are available we will be there to help out doing whatever is needed. Sometimes this is just being at camp on opening day to support parents who are dropping off a child for the first time and have not come to realize what a special place camp is.

Another organization that we have come really to appreciate is the Pulmonary Hypertension Association, PHA. PHA seeks a cure and prevention of PH. It provides hope to PH patients and their families. PH has given us hope with dealing with Shannon’s illness. In return Laura and I assist the organization by being mentors, help line volunteers, parent advisory members and assisting with the bi annual conference.

In thinking about this ten year anniversary I started to hum Thanks for the Memories. The song Bob Hope would sing at the end of his shows. Although I do not feel the end is near. Here is my version.

Thanks for the Memories, 10 years

Thanks for the memories

It’s been ten long years

We’ve stood and faced our fears

We were newbies

Now were oldies

We’ve even shed some tears

How terrifying it’s been!

Thanks for the Alphabet

Test like EKG’s

RN’s and MD’s

The CHB (Children’s Hospital Boston)

The PHA (Pulmonary Hypertension Association)

The THITWGC (The Hole in the Wall Gang Camp)

Especially U!

We’ve had our ups and our downs

Sometimes we’ve even gone round and round

Thanks to you we’ve never hit the ground

We shall not rest

For a cure is best

Here’s to the future

Days without mixes

And concentrator hisses



Docs with all the fixes

How wonderful it will be!

As we celebrate this tenth anniversary I want to thank you for whatever you may have done to make Shannon, Laura and my life more bearable. Even if this was just to say a prayer or wish good thoughts on us. Please take a moment today to thank God for all of the blessing He has bestowed on us. Tomorrow I ask that you once again keep us in your prayers as we head to driving a car, high school graduation, college and many, many more years. And of course do not be afraid to ask Him to provide a cure.