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.

No comments:

Post a Comment