Tuesday, January 25, 2011

Telling the story...

Without our stories, we are unknown.

Without our stories, no one cares.

That's why building awareness of PH is a key element of our work.

For over a year PHA has been working on a connection with the New York Times.  Last week, PHA patient and advocacy and awareness volunteer extraordinaire, Diane Ramirez, broke through...in a big way.  She proved the power  that one person with a compelling story has to make a differnce.

Patient Voices is a well promoted and highly trafficked feature on the NYT website.  And Diane's voice is now there and can be heard loud and clear.

Yesterday, Diane wrote to say that she had just completed another interview with Health Monitor magazine that is expected to be ready for the February issue.  She's now training her sights on Ladie's Home Journal and Woman's World.  Go Diane!

Like anything else, building awareness is a learned process.  It's something anyone with the interest can do...and PHA can help.  If you are interested in finding out how you can get involved in getting your local media intersted in talking about PH, visit the PHAware pages on PHA's website or contact Elisabeth at PHAware@PHAssociation.org for tips, ideas and free media materials.

And the media isn't the only place you can tell your story.  Over 200 are posted in the Our Journeys section of the PHA websire...and with the click of a button, you can post yours there, too.

Wednesday, January 19, 2011

A note about Pathlight...and a few more words

This morning, the first e-mail I saw was from John Hess.  John whose son is a patient has been a volunteer on a number of projects and activities over the years and, more recently, has joined the PHA board of trustees. 

He wrote...

Very rarely do I get down to sit down, relax and read. Tonight I had that luxury and did so with the most recent Pathlight.

As I read Pathlight, I'm inspired by the messages of progress and hope contained within it. I see PHA adding new services and programs with dedicated and inspired staff. I see committed caregivers and patients spreading the word about PH. I see healthcare providers suggesting strategies for transitioning PH children from pediatric to adult programs. I see an entire community of people, separated by geography but bound together by a common cause. It's inspiring and an amazing thing to be a part of.

Of course, it's always nice - and often moving - to receive notes like this.  It also helps us to know we are hitting our targets.  

Pathlight was edited by patients and one caregiver for the first 16 years of its existence. This began in May 1990 when Teresa Knazik, one of PHA's founders, launched the first issue (see left).  She served as editor through 1994. For awhile, she co-editied with another patient, Patricia Murphy. Then Pat's husband Mark Taylor Murphy was editor through 1996 when another patient, Jan Travioli, took over. Shirley Craig was the last patient editor, serving from 2000 to 2006.  

There was a one-word reason Pathlight editing moved from a volunteer to a staff role in 2006. Growth. By the time of its transition, Pathlight had grown to a 40 page per quarter publication.

The real challenge for PHA was keeping the community's voice loud and clear.  Christine Dickler became the first staff editor and began her task by extensively surveying and interviewing many patients, caregivers and medical professionals.  She learned that the key issue for patients was that they wanted to hear as much as possible about how others are living with PH.  That has been implemented by including members from throughout our community as subjects of stories and writers.  As a matter of fact, Christine segmented the publication with a Users Guide that appears in every issue.  The backbone around which each of the issues is built includes the following sections: PHenomenal Lives, Health Matters, Advancing the Cause, Community Classroom, PHenomenal Youth, and Family PHocus.  All are written to offer what our readers have told us is important to them. 

When Christine left the editor position (first to go to gradiuate school, then to return to lead our International Services department) Megan Mallory took over as editor.  She maintains the same commitment to getting the story of this community out in ways that bring value to those whose lives are touched by this disease. 

John, thank you for noticing.

Thursday, January 6, 2011

As we begin...

Five days into the new year, we had our first big meeting.

In 2011, PHA will deliver over three million dollars of medical education across five programs in our Medical Education Fund.  This is extremely important in a field where the number of treating physicians has grown from about 100 to well over 6,000 in little more than a decade.  It is important to expand knowledge of diagnosis and treatment and to connect medical professionals with experts in the field. 

With two medical associations (one for physicians and researchers, the other for nurses and other allied health professionals) operating under the PHA umbrella, the organization continues to be in a great position to deliver this knowledge in ways that help to improve practice in the field.

PHA manages several of these programs directly but also uses contractors to provide support on logistics and slide development.  

Today, we met with our primary contractors to finalize plans for 2011 programs.

Long-time board member Jack Stibbs flew in from Houston to join us.  As our volunteer (thank you Jack!) attorney, Jack has guided PHA through a decade of important legal agreements and he was here today to help us again.

This time Jack came with his daughter Emily, now a college freshman.  One of the great joys of our work here at PHA is seeing young patients grow to young adults...and indeed Emily, who was diagnosed at age six is one of those.

...and it was great to have her help our Patient Outreach and Services staff, Emma and Michal, review our programs for young patients.

All in all, today was a very good day...a very good start for the year.

So, thanks again to the Stibbs family.  That's Jake, Marcia, Jack and Emily in the picture - at the Crawfish Festival they organize every year to support PH research.  Their next one is March 26, 2011!