Out on the Road: PH Education Coming Straight to You

This week, I asked Danielle Thomas on our Meetings staff to tell you a bit about our September PHA on the Road events in Houston and San Diego. These are PHA’s regional one-day conferences. We began offering them in 2008 so that people who weren’t able to come to our International PH Conference could have Conference come to them. 

Why should you come or, if you don’t live in the area, why should you take a minute to tell your family or friends who do? Take a look at the program book, and you’ll know right away!

As a new PHA staff member, I am really looking forward to my first PHA on the Road: PH Patients and Families Education Forum, and I want to encourage as many of you as possible to join me there. In a little over two weeks on Sept. 6, I will be boarding a plane and heading to Houston, Texas, for the first of two PHA on the Road forums. The second forum takes place on Sept. 20 in San Diego, Calif. If you’re in the Houston or San Diego area, you won’t want to miss this event. If you're not, you'll want to tell friends and family who are. Registration is FREE and includes continental breakfast and lunch. While registration is still open, I have to stress that space is limited - so register soon! Registration for Houston closes Tuesday, Sept. 2, at 3 p.m.

If you’d like a sneak peek at the great sessions that await you, just keep reading. I’m happy to share that the PHA on the Road sessions for Houston (Sept. 6) have just been announced! Most of the Host Committee listed below will be presenting at the following sessions. Stay tuned for announcements about San Diego, Calif., (Sept. 20) soon.

In Houston, we’ll learn about the basics of PH, PH and associated conditions and much more. We’ve even got a session in Spanish! Here's a list of the sessions, or you can check out the program book for more details.

General Sessions: Medically Led

• Diagnosis: How is PH Diagnosed?
• Types of PH
• Current Therapies & Management of PH: How Does My Doctor Choose the Right Medication for Me?
• What’s on the Horizon?: Clinical Trials & Drug Development

Breakout Sessions: Medically Led

• Connective Tissue Diseases & PH
• Diagnósticos, Tratamientos y Viviendo con HP - Spanish Session
• Exercising and Dining Better
• Lung Transplantation for Pediatric and Adult Patients
• Preparing for Travel and Emergency Situations with Adult and Pediatric PH Patients - Offered Twice
• PH & Other Associated Conditions: Lung Diseases, Left Heart Diseases & CTEPH
• Workability, Insurance & Disability with PH

Breakout Sessions: Patient and Family Led

• A Patient-to-Patient Guide for Living with PH
• Can You Hear Me Now? Communicating about PH
• The Caregiver’s Guide to Surviving Pulmonary Hypertension

Several medical professionals are helping to put this amazing event together in Houston. The PHA on the Road Host Committee for Houston, Texas, includes:

• Deborah Jo Levine, MD - Regional Committee Co-Chair/University of Texas Health Science Center at San Antonio, San Antonio, Texas
• Zeenat Safdar, MD - Regional Committee Co-Chair/Baylor College of Medicine, Houston, Texas
• Royanne E. Holy, RN, BSN - Baylor College of Medicine, Houston, Texas 
• Maureen Mayes, MD, MPH - University of Texas – Houston/Medical School, Houston, Texas
• Bela Patel, MD - University of Texas at Houston/Health Science Center, Houston, Texas
• Fernando Torres, MD - University of Texas Southwestern/Medical School, Dallas, Texas
• Nidhy, Varghese, MD - Texas Children’s Hospital, Houston, Texas

All of us at PHA are happy to answer any questions you may have about this exciting program. Be sure to check out our website for more information. I look forward to seeing you soon on the Road!

Pathlight: A Look Back at Our History and Toward Our Future

At PHA, you are the driver of change.

This week, Pathlight editor Megan Mallory writes about Pathlight’s beginnings and where it’s headed. It’s an important conversation. Since I came to PHA in 1999, I have been told over and over again how important Pathlight is to our members. We do not take changes in this publication lightly.

As part of the PH community, you are an important part of the definition of Pathlight’s future. Reading below, you will find a link to a survey that will help keep Pathlight a great value to you. Please take a few minutes to complete it and help define the future. As always, your much-appreciated participation makes all the difference!

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Nearly 25 years ago, in May 1990, 50 copies of the first issue of Pathlight mailed to every PH patient the founders knew about, and to doctors and university hospitals. Since that time, Pathlight has grown from a four-page issue with a distribution of 50 to a 60-page issue with a distribution of approximately 10,000. The look has changed over the years, but the mission has remained the same: connect the PH community and provide stories of inspiration, hope and support.

Now in 2014, we are looking again to the PH community to help ensure that Pathlight remains strong and continues to reflect all the wonderful things that we do in our community of hope. Please take the Pathlight survey to help us keep Pathlight going strong. The survey takes approximately 10 minutes, and after August 10, it will no longer be available. So, please take the survey today!

If you take a look back at Pathlight over the years, you will see how much it has grown and changed, and yet, it remains the same in all the most important ways. For instance, the regular column “Ask a PH Specialist” began as “Dear Doctor” in that first issue in 1990, and “Passages” was known as “In Memory” and included three names. Every issue – from that first issue through today – is dedicated to the memory of PH patients who have gone before.

In the early 1990s, Teresa Knazik, one of PHA’s founders, served as the first Pathlight editor. Read our very first issue now.

Pathlight May 1990

Following Teresa's contributions as editor, Mark Taylor Murphy became the second Pathlight editor, Jan Travioli followed him as the third Pathlight editor, and Shirley Craig contributed her talents as the fourth Pathlight editor. Each of these individuals was a volunteer, contributing their time and their talents to making Pathlight as strong as possible.

From 2000-2006, under Shirley's guidance as editor, Pathlight became a 32-page publication, and it began printing in color. Read this issue of Pathlight from the fall of 2006.

Pathlight Fall 2006

Over the years, it became clear that Pathlight’s growth was creating a heavy burden for volunteer editors and, working with Shirley Craig, Pathlight editing became a staffed activity in early 2006. The clear mandate in moving from patient and caregiver editing was to make sure that the publication remained relevant to member needs.

PHA now coordinates the creation of Pathlight each quarter, and we try very hard to ensure that Pathlight always reflects the community’s voice. As a result of a community survey in 2007, Pathlight received a new look and updated content. Take a look at Pathlight from the summer of 2008.

Pathlight Summer 2008

Pathlight became a full-color publication in the summer of 2010 with all photos and graphics printing in color, and to celebrate its 24th birthday this past spring, Pathlight became available for the first time in an electronic version, easily accessible on computers, smartphones and tablets. Check out the last three issues of Pathlight now.

Winter, Spring and Summer 2014 issues of Pathlight

The name, Pathlight, was derived from the founders’ purpose. As the late Dorothy Olson, one of PHA’s founders, once said, “We wanted to find ways to light the way to awareness.”

As we look ahead to Pathlight’s future, we want this important publication to continue to light the way for many years to come. Help keep Pathlight going strong by taking our 2014 Pathlight survey and letting us know your thoughts on our community’s publication. The survey will not be available after Sunday, August 10, so please tell us your thoughts today!

If you have any questions or would like to contribute articles to Pathlight, please contact Megan Mallory, Pathlight’s current editor, at Print@PHAssociation.org or 301-565-3004 x754.