Wednesday, October 29, 2014

Welcome to PH Awareness Month!

Thanks go this week to Katie Kroner, PHA’s Director of Advocacy and Awareness. Katie has been with PHA for nine years and helped organize a great many Awareness Months. In her guest blog, Katie introduces PH Awareness Month 2014 and gives you links to easy things you can do to make a big difference.

By the way, I do intend to get back to writing my blog again as soon as I can find time. The past five days have been a pretty good example of what’s been keeping me busy beyond the normal workload. Thursday was a stop in Denver where Dr. Dave Badesch was inducted into the Colorado Pulmonary Hall of Fame. Dr. Badesch has been a backbone in PHA’s development of a strong medical community. Friday to Fresno, Calif., where I was hosted by Perry Mamagonian and Dr. Vijay Balasubramanian. I was there for the 3rd Annual Fresno Six-Minute Marathon and Fun Walk on Saturday and got to see many old friends and make many new ones. Saturday evening on to Austin, Texas, for the American College of Chest Physicians (CHEST) Conference where I had many side meetings. After an eye-opening 5 a.m. CTEPH session on Monday (and a few following meetings), I flew back to Maryland to get back to my desk on Tuesday morning. Travel will slow after Dec. 15, and I look forward to being more active with my blog again.

Rino


Welcome to PH Awareness Month!
Don’t Miss Two Big Opportunities on Nov. 1

Pulmonary Hypertension Awareness Month kicks off this Saturday, Nov. 1, with two not-to-miss opportunities.
  1. Join Color the World Periwinkle DayOn Nov. 1, wear periwinkle and take a photo. Hand out wallet cards. Share with your online networks. Your imagination is the limit!
  2. RSVP by Nov. 1 for PHA’s Congressional Luncheon and National Advocacy Day. This free event gives you the opportunity to have your voice heard by your Members of Congress and their staff. Even if you can’t attend, get involved by inviting your Members of Congress or their staff to the Luncheon (and following up to see what that person thought and will do).
Lighting the Way to a Better Tomorrow

This year’s Awareness Month theme is Lighting the Way to a Better Tomorrow. Too often, a pulmonary hypertension diagnosis feels like being shoved into a dark corner. Who can see that you are sick? Who understands what you’re going through?

Each time one person tells another about PH, they dispel a little of that darkness. Whether you are sharing your diagnosis story with a reporter, advocating before your Members of Congress, fighting back through fundraising or talking about PH with a neighbor, you are a light for a PH patient. Together, we are Lighting the Way to a Better Tomorrow.

You are Our Hero

If you read this blog regularly, you know that Rino often shares the stories of PH heroes – everyday people who are changing the course of pulmonary hypertension by ending isolation, inspiring others and proving that “hope is a verb.”

What you’ll discover during Awareness Month is that you are one of those heroes. Whether you are sharing your story by pitching it to the media, creating a personal fundraising page or posting a photo of your clot during CTEPH Awareness Day on Nov. 18, you are part of making life better for PH patients everywhere. And that’s something big.

Don’t forget to send us your awareness month stories, photos and videos so that we can share them with the entire PH community.

Wednesday, October 15, 2014

PH Care Centers (PHCC) and the Patient Registry

The PH Care Centers Program and the PHA Patient Registry mark a major milestone in our community's fight against this terrible disease. Over the next 18 months as PHA takes applications and begins to review and accredit sites, we know this process will lead to a trusted quality of care for patients. So far, PHA has received 19 applications from medical institutions and is receiving new applications each week. I have asked Olivia Onyeador, PHA's PHCC Program Manager, to talk about the milestone we met with this program this fall.

At PHA, when we say that “Our mission is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness,” we mean just that. One “way” that has been carefully planned, heavily researched and recently launched this September 2014 is through the Pulmonary Hypertension Care Centers (PHCC) Program. Colloquially referred to as the PHCC Program, PHA’s Scientific Leadership Council and various PHA medical leadership and staff created this initiative as a way to improve the overall quality of care, and in turn the outcomes, of patients with PH.

The program aims to promote diagnostic and treatment standards. One goal of the program is to provide benefits to patients, families and caregivers by increasing awareness of expert care and access, increasing education and support, and developing more opportunities for participation in clinical research.

Part of the value of the PHCC is the commitment of future accredited Centers to provide the highest standard of care, based on PH consensus guidelines, to patients receiving treatment at each accredited Center. As a part of the PHCC, Centers will eventually participate in a PHCC Patient Registry, a vital part of this program’s commitment to patient-centered research. Data from this registry will help to inform future guidelines and best practices for the care and treatment of PH patients.

Currently, six sites have been accredited through the PHCC Pilot Site Program. The purpose of the Pilot Site Program was to solidify the accreditation criteria and guidelines set forth for PH programs applying for accreditation and to refine the process of reviewing future applicant Centers. The PHCC review and application process is slightly rigorous as the intention is to ensure patients at accredited Centers are receiving expert level care. After a Pilot Site review at the University of Pennsylvania PH Pulmonary Vascular Disease Program, Dr. Steven Kawut commented that the site review “highlighted our educational efforts at various levels and made us re-evaluate quality improvement initiatives and ways to improve the patient experience.” As the PHCC Program grows, it is of utmost importance to continue to stress the necessity of quality improvement in the field of PH in an effort to decrease the misdiagnosis and mismanagement of PH patients.

Although I have been with PHA for less than a year, I realize that I am only a small piece of a large, ongoing movement in the PH community. This movement includes everyone touched by PH and is growing each day. As we look to the future, and the ability to glean valuable data from the PHCC Patient Registry, we look to build upon current standards and guidelines to aid in the fight against PH.

The PHCC application was launched on Monday, Sept. 29. It is now open to the public for submission and available for download.

Wednesday, October 1, 2014

Together We Can "Color the World Periwinkle"

As we prepare for Awareness Month this November, Diane Greenhalgh, PHA's Director of Web Services has written this week's guest blog. She makes the important point that PHA's Internet connections, while an important social benefit, are also a tool for increasing awareness and fighting back against PH. Awareness Month is coming and you are essential to its success.

When I started at PHA in 2006, Rino talked a lot about how important our online communities are for ending the isolation that patients and families feel. With social media and other online community tools, the PH community across the world is coming together and forming lasting PHriendships online even though they have never met in person. My roommate and best friend Alex, who is a PH patient, has only ever met some of her closest friends in person at PHA's biennial conferences.

Now that we have this global network, let's take it out for a spin and see what it can do! In exactly one month from today we are asking the entire PH community to unite with your PHriends from across the globe as one voice to kick off PH Awareness Month with Color the World Periwinkle Day on Nov. 1.

This starts with the very simple act of wearing periwinkle, or purple, on Nov. 1 along with your PH gear. Advertise about Color the World Periwinkle Day beforehand to everyone you know so they do the same.

From there you can do a number of things to color your world periwinkle. You can create a personal story page so people can understand what it is like to live with PH and have a way to support you, organize a small PH-themed event like a happy hour or party, and spread awareness to your online networks.

Regardless of how you decide to celebrate Color the World Periwinkle Day we have the tools you need to guide you through the process and staff to support you, whatever idea you come up with.

Check out our Color the World Periwinkle Day resources, and don't forget to check out the other ways you can raise awareness throughout PH Awareness Month and beyond.

As individuals we can make a difference. Together we can change the future of this disease. PHers unite!

Wednesday, September 17, 2014

PHAware: Taking Us from Rare to Everywhere

This week, I asked Renee Hockaday, PHA’s Director of Communications, to guest blog on an amazing and growing media awareness program at PHA that holds the promise of helping to make our fellow citizens truly learn and know about pulmonary hypertension… and help us build a better future.

When you meet PHA Board member Steve Van Wormer, you are struck by his boundless energy. But if you look a little deeper, you’ll see his profound commitment to raising global awareness and finding a cure for pulmonary hypertension.

It started with PHA’s public service announcements (PSAs), which Steve put together on a shoe string budget and a Tom Lantos Innovation in Community Service Award. Through our PSA Media Blitz, those PSAs have now been delivered to more than 11,500 TV and radio stations across the country. Each day, new stations and networks are saying “yes” to airing our PSAs while celebrities are sharing our stories.



“I wanted to do something so that more people know about this disease,” says Steve. “The PSAs have taken off and now we can do even more.”



Steve’s vision and determination have thrust our PSA program onto the national stage by creating relationships with Fox Networks Group, Fox Hispanic Networks, CBS, Radio Disney, Hulu, Univision, Telemundo, ESPN, Warner Bros. Records, and Universal Sports Network as well as engaging celebrity supporters – Michael Buble, Laura Dern, Florence Henderson, Courteney Cox and others. This is broadening our audience at an exponential rate, quickly moving the conversation from “What is PH?” to “I’ve heard of that disease… I saw it during the game last night!”



But it doesn’t end there. Marie Mascia-Rand, Director of Community Engagement for PHA's Greater New York and Philadelphia Chapter, has leveraged her connections and relationships in the New York City area to create some amazing exposure for PHA. Because of her efforts, PHA’s PSAs have aired on the TVs in New York City taxicabs – yielding nearly one million impressions during a recent two-week run. And in November, you’ll see our newly branded PHAware PSA Campaign appear in Philadelphia taxicabs, on the largest video screen in the world – the NASDAQ building in Times Square, and in a new print campaign on New York City taxicab toppers. Her passion for this project comes from her own experience as a caregiver, having lost her daughter Chloe to the disease.

So what is PHAware?

PHAware’s goal is to elevate and leverage PHA’s mission and messaging to the general public, news media and potential donors who are becoming aware of PHA through our ongoing PSA Media Blitz.

PHA’s grassroots media campaign (formerly the PHAware Campaign) is now called the Media Action Network. The name change is part of this exciting new opportunity to launch PHAware.org as a resource for those who hear about PH through PHA’s public service announcements, cab toppers and other public awareness efforts.

To celebrate this new PHAware, we are developing a new website and a social media portal to quickly connect to all our outward facing media messaging. PHAware.org will officially launch Oct. 15 – just in time for Awareness Month! In the meantime, you can go to the website to get a sneak peek of what’s to come, and be sure to:

  • “Like” us on Facebook
  • Follow us on Twitter and Instagram @PHAware
  • Use the #PHAware hashtag and post inspirational stories on your own social media sites
  • Share this information and invite everyone to help heighten PH awareness

And this is only the beginning. We see our PHAware messaging reaching pharmacies, supermarket checkouts, gas station TVs, ATMs, hospital and pediatrician TVs, sport arena jumbotrons, billboards and beyond. This exposure will allow us to tell patient stories in ways never before imagined. This opportunity will be the catalyst to create a greater impact on the discourse of healthcare and disease prevention in this country.



As the momentum continues to build, we encourage you to be a part of the campaign. 
Make calls to TV and radio stations and encourage them to play our PSAs.

Visit www.PHAssociation.org/PSAs for call scripts, a how-to webinar and step-by-step instructions.

Contact ProjectPSA@PHAssociation.org for a list of stations in your area.

Go to PHAware.org to see how we are telling the PH story.

Like us on Facebook

Read about us on Twitter and Instagram. @PHAware

And look for us in Times Square in November!

Rare to everywhere indeed.





Wednesday, September 3, 2014

Using film to change the world...

In the U.K. there is a graffiti artist and filmmaker named Banksy. This week I read a quote from him that went like this…

Film is incredibly democratic and accessible, it’s probably the best option if you actually want to change the world, not just re-decorate it.

I was struck by his words. They truly reflect how our community uses film to tell our story and to make a better tomorrow. This blog is about three efforts.

The first is from a young girl living with PH. Hers is the story of a young hero, fighting for a better tomorrow. Watch it below or on Facebook




The next video is a mirror to PHA's International Conference. Each Conference, PHA creates a video to try to capture the energy and excitement of the event. Conference is the one time that the strength of the community can be seen and felt in one place. This is our effort from June 2014. We hope you enjoy watching. Oh, and staff are now reviewing more than 40 of the plenary and breakout sessions. Soon you'll be able to watch those too. We'll let you know when they're posted on www.PHAssociation.org.



The final video is from Team PHenomenal Hope. Thanks to Chuck Finder and the good folks at University of Pittsburgh Medical Center, we have a new 23-minute film telling the story of their non-stop Race Across America to raise awareness and funds for pulmonary hypertension. Get your popcorn and settle in!



If there's a lesson from these videos, it's that there are many ways to effectively get our story out. Whether told from a webcam or with professional equipment, effectiveness comes from a good idea and just going out and doing it.

Wednesday, August 20, 2014

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!

Wednesday, August 6, 2014

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!
___________________________________________________

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.