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..

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...

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.

Persistence...

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 13...so 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.

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.

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

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.

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!

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.

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!

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

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.

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?

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 http://www.amazon.com/Childrens-Garden-Ankoor-Talwar/dp/8189134124/ref=sr_11_1?ie=UTF8&qid=1210386509&sr=11-1

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.

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
www.okcfox.com/newsroom/morning_news/videos/vid_221.shtml

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!

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.

Click here to play a PH Resource Network video

Getting started...

A couple of months ago, we invited interested staff to think about how PHA could make the most out of the new social networking opportunities. 18 volunteered!

Today, Nathan Barker, who works on PH awareness, laid out the first steps in our Awareness Month Facebook strategy.

We're off and running - and so I thought I should jump in and do my part. In my work, I do a lot of travelling and meet a lot of amazing people. From my desk at PHA, I also have a birdseye view of how this community is growing in so many ways to change the history of pulmonary hypertension.

In this blog, I hope to share some of the things I'm privileged to see and give a picture of how a group of committed people in a small disease state are making a big difference.