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 Day. On 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.

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!