Within its first decade of being founded, the Pulmonary Hypertension Association (PHA) organized the first national pulmonary hypertension (PH) campaign, in November 1997. Its goal was simple: to raise awareness of a little known disease with few treatments and devastating consequences.
Every year since then the landscape has become more hopeful. Today, with 14 FDA-approved treatments, many areas of promising research, increasing numbers of physicians and clinics across the U.S. that focus on the care of individuals with PH, and PHA’s robust community of support and educational resources, there are many more messages of hope to share during Pulmonary Hypertension Awareness Month, which launches tomorrow, Friday, Nov. 1.
This year, PHA’s “PHaces of Hope” campaign celebrates all of you, our community of individuals with PH, along with your caregivers and health care professionals, who continue to inspire and empower others. Your faces, your stories and your voices will be sending messages of awareness and hope. Those messages will be seen by doctors who may not know to suspect pulmonary hypertension and, as a result, may misdiagnose its symptoms as asthma, individuals who are seeking answers for the breathlessness and fatigue they have been feeling, and journalists who did not realize that pulmonary hypertension can strike anyone at anytime.
Our campaign begins with the very different stories of two individuals with PH, Aleksandra Ivanko-Deel, who was born with a hole in her heart but finds hope in research, support and her doctors, and Neil Derheimer, whose doctors and exercise have helped him to improve his health. You can read about them at PHAssociation.org/PHaces.
Starting tomorrow, PHA invites all of you in our PH community to join PHA in educating others about PH. PH Awareness Month during November and CTEPH Awareness Day on Nov. 13 aim to raise awareness of PH among non-PH specialist physicians, people at risk for PH and those who unknowingly live with PH, as well as the public, media and elected officials.
There are many ways everyone can take part this year in spreading awareness of PH. First, visit PHAssociation.org/AwarenessMonth to find information about PH and links to many online resources, including a downloadable toolkit where you will find:
- Social media profile frames and cover photos for Facebook, Twitter and Instagram.
- Sample social media posts you can share. PHA is using #PHAwarenessMonth and #PHacesofHope to identify the 2019 awareness campaign.
- A customizable press release that you can use to share your story or event with your local media.
- A poster on PH symptoms and three downloadable flyers (an awareness flyer with information about ways to get involved, a PH Fact Sheet and a CTEPH diagnosis/patient story) to print or email.
- A customizable proclamation for local elected officials.
- A calendar to locate a nearby fundraiser or create an online fundraiser for Awareness Month.
- Sample emails to send your legislators on National PH Day of Action on Nov. 7.
- An email footer you can add below your signature.
In addition, a CTEPH Awareness Day site features resources and events for CTEPH Awareness Day activities on Nov. 13 that include a Facebook Live event with Dr. Peter Hountras from the UC Health University of Colorado Hospital at 1:30 p.m. E.S.T. at Facebook.com/PulmonaryHypertensionAssociation.
We encourage you to help spread the word through social media, print and online articles, talking to elected officials, and engaging in fundraising events. As part of the PHaces of Hope campaign, you can share either a short written or video story by filling out a form at PHAssociation.org/ShareYourHope. New stories from the campaign will be shared daily on PHA’s social media channels and on the PHA website at PHAssociation.org/PHaces.
Thank you to all our support group leaders and volunteers who are helping to raise awareness by holding support group meetings, distributing free posters and flyers, conducting interviews and asking elected officials to pass proclamations during PH Awareness Month. Your participation is critical to the success of our awareness campaign and to making our voices heard! PHA is also grateful for the sponsorship support provided by Actelion Pharmaceuticals U.S., Inc. for Pulmonary Hypertension Awareness Month and Bayer for CTEPH Awareness Day.
We appreciate the work that all of you in the PH community do to raise awareness of PH on an ongoing basis. This is a critical way to help encourage earlier diagnoses that can lead to improved patient outcomes, spark interest in research, help drive attendance to our fundraising events and convince elected officials to pass legislation that supports our patient community. Every one of these actions helps bring us closer to PHA’s vision of a world without PH, empowered by hope. I’m looking forward to hearing how you are participating in awareness activities this month – please write to me at BradWongPHA@PHAssociation.org.
Best wishes in all of your efforts,
Brad A. Wong
President & CEO