Taylor and Sarah...

Taylor and Sarah.  Two little girls on different coasts..

On June 5, 2010 the Caffrey family hosted The Race 2 Cure PH - The Taylor Caffrey Memorial 5K Run/Walk in Anaheim Hills. Nearly 600 runners and walkers registered and many more came to show their support..

Shari and Michael had lost Taylor on September 19, 2009 at the age of  4 1/2  She had been diagnosed with PH in 2008.

Taylor - known to her team as as Coach Tay - was undoubtedly the youngest coach in the history of the Canyon Hills Soccer Association, where she participated with her sister, Brooke.

The family has created a website, TaylorsWish.org/, to keep her spirit and inspiration alive.

Yesterday, Michelle Peek called.  I hadn't seen her since I met her and her husband David and their children Sarah and Sarah's little brother, Nathan last October at the New York Walk for PH on Long Island.  I had blogged about Sarah and her family shortly after the event.

Michelle had a question to ask but when she eased into it slowly, I knew there was news.

Did you hear about Sarah?

I hadn't. She told me that Sarah had passed on March 3 at age 7. Another great sadness.  Another reminder that as fast as things are moving, they still don't move fast enough.

Syracuse Online reported on Sarah.  Thie story included Sarah's dream to ride a bike.

At Christmas, her grandparents bought her a three-wheeled bike. In a photo taken Christmas Eve, she’s standing on the pedals, smiling broadly. The straps from her backpack can be seen over her yellow Christmas pajamas.

Michelle told me she is working with their family's church which is organizing an August awareness event in Sarah's memory.  PHA will help with that in whatever ways we are asked.

Our condolences to the Caffrey and Peek families and to all who, despite terrible loss to this disease, continue to help others.  We share your sadness.  We are in awe of your strength and your humanity.

The Run-Up to Conference...

Last week we began the final run-up to Conference And run it is...        


Wednesday started us off on a frantic series of activities. Online registration was scheduled to end (we gave it an extra day) and Doreen led our next to last Conference staff meeting with lots of details and marching orders.  On Thursday, the 10 committee chairs that make up PHA's Conference Committee held their last pre-Conference call.  On Friday, staff packed up everything we're shipping to Conference.  On Saturday, over a dozen staff were in for various projects, most importantly putting together the idividualized Conference packets that each registrant will get.  Also, on Saturday, the Conference program books went on the printing presses and the ScientificSessions book began final review.

The end of online registration is also a marker point for how we're doing with registrations. 

I'd say we're doing pretty darm good for this kind or economy...or any kind of economy.

At close of online registration in 2008 (also two weeks out), we had 1,015 registrants.  This year, we had 1,108 - 93 better.  And, registrations continue to come in briskly by phone and fax.

Congratulations to everyone involved.  It's a great testament to the value of this meeting - and a lot of hard work!

7 Years in a Row...

While blogging a couple of days ago about the check PHA received from the law firms involved in the nifedipine lawsuit, I started thinking about some of the things they must have seen as they made their giving decision.

For the past seven years, there has been a little box at the bottom of PHA's web pages showing a 4-Star rating from Charity Navigator, the internet's largest and most highly regarded evaluator of non-profit performance.  Their most recent evaluation came in May. Clicking on that box brings you to a lot more information about that rating and what it means.

In the same place, we also carry our Better Business Bureau Accredited Charity designation, showing that PHA meets all 20 of that evaluating organization's standards.

It's good to know that evaluations like these draw attention and interest...and apparently can have quite an impact.

Quite a surprise...

"What do you know about this?"

Those were the first words I heard when I got back into the office on Monday afternoon following an outside meeting. Our Senior V.P., Adrienne Dern and Finance Director, Patty Scuderi handed me a letter.  Looking at the letterhead, I saw it was from an attorney's office...leading to an immediate "uh-oh" in my head.

As I read, I saw that we had been selected to receive residual funds by three law firms involved in a class action settlement regarding price fixing on the calcium channel blocker, nifedipine.  Before I finished reading, Adrienne and Patty handed me the check...$576,246.64!  My uh-oh turned to amazement.

While we were aware of the drug (it's described in the calcium channel blocker section of PHA's Patient Survival Guide), we had no idea of any lawsuit or that we were being considered to receive residual funds.  This was truly an astonishing moment.

The next day, the Chair of our Development Committee, Dr. Mike McGoon, put in calls to attorneys at each of the involved lawfirms to help us better understand how this had happened and to invite a representative of the firms to attend Conference to see what their decision is helping to buiild.

Mike reported back that the attorneys had researched PHA and determined that we were a well managed organization doing important work that could put the funds to good use.

To receive this sort of recognition and support from people we have never met goes far beyond the surprised happy face at the top of this blog.  It is really quite gratifying.

A blog of a different color...

Usually, I write about what's happening at PHA.  Today's a little different. It's about context.

When I graduated from college many years ago, I went into VISTA - what was then described as the domestic Peace Corps.  Having grown up in the Bronx, moving to very rural St. Mary's County, Maryland was a real change.  The project was grass roots, founded by local people who had led civil rights activities in the county in the 1960's. It was still a turbulent time with several VISTAs being burned out of their homes.  However, I met many wonderful people and, after my year of service, went back to New York. 

Eighteen months later, I was surprised to be invited to return as the VISTA supervisor. I accepted.

So, at the age of 25, I found myself supervising 19 young people who wanted to make a difference.

One of the issues that struck me as important then was finding a pathway for our staff once they finished their year of service.  How could those who wanted to turn their experience into a career.

At that time, I started reading about a Catholic priest who had come from the coal fields of Pennsylvania to the inner city of Washington, DC, where he had walked the streets with other civil rights leaders during the DC riots.  Geno Baroni went on to found the National Center for Urban Ethnic Affairs and that's where I began to refer our VISTA Vilunteers and where I met Geno and his operations director, Jerry Ernst.

Geno and Jerry and others were building a netowrk of neighborhood and ethnic organizations focused on values and sense of place.  Like many great men and women, Geno had one great speech, one great message.  His was built around the idea that neighborhoods are the building blocks of cities and families are the building blocks of neighborhoods."  As the son of an immigrant, born one year off the boat myself, Geno's message resonated deeply with me.

Recently, my friend Carmella, invited several of Geno's "alumni" for dinner.  It was a great night.  The best part was her sharing of a video that none of us knew existed.  It was excerpts from one of Geno's last speeches before he died in 1984 after his thrird recurrance of cancer.

What was on the video - and the memories it triggered - reminded me how much I learned from Geno and the others I was privileged to work with in those days.  Those lessons about building organizations and working with and managing people toward a goal have never failed me and are the root of how I have approached my work at PHA.

I converted the videos to DVDs for Geno's friends and posted them to You Tube (in two parts) for their value to another generation.  Both parts are below.

From Mountains to Rivers...

From climbing Mt. Kilimanjaro to swimming the Mississipi, people whose lives are touched by PH continue to find amazing ways to help fight against this disease. They are our heroes.

Lil Long' s best friend Nicky Roberts died of PH in 2007.  Lil says they did everything together and now on Sept 4, 2010, the day after the third anniversary of Nicky's death, Lil - who was diagnosed with PH herself shortly after Nicky's death - will swim the Mississippi in her friend's memory.  Both women had been event planners and Lil Long will be using her swim to raisie funds for PHA.  You can help, too.

Here's Lil's interview on WXVT Delta News...

A Quick Lesson in Persistence

When Elisabeth Williams, who works with PHA's grass roots advocacy and awareness efforts, told me the story of what Dick Turnsall had accomplished in working with his member of Congress, I thought it carried a great message on what one person, sticking with it, can accomplish.  Thanks Dick for what you've taught us and Elisabeth for sharing his story in your guest blog.

If you want to know something about what a little persistence and initiative can get you, Dick Tunstall, one of PHA’s 435 Campaign members can fill you in. As a member of the 435 Campaign the last three years, Dick contacted his Members of Congress about pulmonary hypertension (PH) through letters and visits. Last year, Dick set his sights on getting Representative Himes (D-CT) to cosign H.R. 1030 the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

The road began in July 2009, when Dick started working with Representative Himes’ staff to schedule a visit with Mr. Himes in his Washington D.C. office. After several months of back and forth, which included Dick inviting Representative Himes to his Support Group meeting, Dick met with Himes in October 2009. The meeting was very successful--Representative Himes expressed interest in co-sponsoring H.R. 1030!

But the story doesn’t end there. By early March 2010, Tunstall was disappointed to find out that Representative Himes had still not signed onto H.R. 1030. Instead of giving up, Tunstall, persisted and followed up with Mr. Himes office again. The result of all of that hard work? As of May 24, 2010, Representative Jim Himes (D-CT) is officially listed as a co-sponsor on H.R. 1030.

Good work Dick—indeed, persistence does pay off!

Find out how you can help with the PH Research and Education Act  in the House (H.R. 1030) and in the Senate (S. 2803).  Click on Read About This Bill at the top or bottom of each page to find out whether your Member of Congress or Senators are co-sponsoring the PH Bill..  Learn more how you can  connect with your own Member of Congress through the 435 Campaign