Living PHearlessly is goal for PH Awareness Month and beyond

Events in November seek to amplify the voices of those in PH community

Jacob Harney, PhD avatar

by Jacob Harney, PhD |

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The pulmonary hypertension (PH) community will be busy raising awareness and funds for research this November as they recognize Pulmonary Hypertension Awareness Month.  

Leading these efforts is the Pulmonary Hypertension Association (PHA), the country’s oldest and largest nonprofit dedicated to the PH community. The PHA’s mission is to improve the lives of those affected by the chronic disease — during awareness month and beyond — with a focus on research and extending patients’ survival.

This year, the PHA is launching a “Live PHearlessly” campaign to highlight the resilience of people with PH. Throughout November, the organization will share inspiring stories that show how patients thrive despite having the disease.

The PHA also will provide educational tools about risk factors, signs, and symptoms of the disorder, estimated to affect about 1% of people globally.

“PHA continues to share stories of the triumphs and challenges of individuals with PH. This awareness month we highlight how members of the PH community ‘Live PHearlessly,’ proving that a PH diagnosis doesn’t define them,” Tony Lahnston, chair of the PHA board of trustees, said in a press release.

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To participate in the PHA’s campaign, one simply fills out an online form and submits it by Nov. 30.

“This year, we’re looking for anecdotes, tips and quotes about how you ‘Live PHearlessly’ in the face of PH,” Matt Granato, the association’s president and CEO, wrote in his CEO update. “We believe the experiences of people affected by PH will personalize your triumphs and challenges for health care professionals, researchers, lawmakers and the public. Ideally, their increased knowledge about PH and the issues you face will lead to more research, earlier diagnosis and appropriate treatment.”

Community awareness is key, the PHA says.

BioNews Inc., publisher of Pulmonary Hypertension News, likewise will be running a “Community Spotlight Campaign” during the awareness month aimed at amplifying the voices of people with PH. During November, 10 personal stories of people in the PH community will be published to boost awareness and encouragement.

“Tribe of PHighters run through three generations of a family” and “Our family reaches for milestones despite a PAH gene mutation” are two examples.

Multiple events by the PHA will contribute toward raising awareness of the progressive disorder throughout the month. On Nov. 8, the PHA will raise awareness for chronic thromboembolic pulmonary hypertension (CTEPH) on CTEPH Awareness Day. This rare type of PH is caused by blood clots in the blood vessels of the lungs. 

To share and amplify its message on CTEPH Awareness Day, the PHA will release videos in English and Spanish with 10 relevant facts about this disease type. In addition, the PHA will release a video with the diagnosis and treatment story of CTEPH patient Mark Porter. Finally, the PHA will host a national virtual support group for people with CTEPH at 8 p.m. ET Nov. 9.

On Nov. 15, the PHA’s Day of Action aims to bring attention to the need for supplemental oxygen access. Stories and photos from the PH community will be shared on social media.

Sending letters to editors of magazines, newspapers, and online platforms is strongly encouraged. Reaching Congress to expand access to supplemental oxygen also is suggested.

Then, on Nov. 28, the PHA will celebrate GivingTuesday, the global day of giving, welcoming community support and participation.

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PHA Canada holding Annual 6-Minute Walk for Breath on Nov. 18

Regarding webinars, the first of the PHA’s two-part series — called “Hope Through Research in Pulmonary Hypertension: Emerging Developments” — will be held 2 p.m. ET Nov. 30. Broadcast in English and Spanish, this webinar will focus on PH research developments and the PHA’s involvement in clinical trials.

The second webinar will be help two weeks later, on Dec. 14. Titled “Hope Through Research in Pulmonary Hypertension: Clinical Trials,” it will start at 2 p.m. ET. The two webinars were planned in collaboration with Fundación Contra la Hipertensión Pulmonar, a PH organization in Spain.

The PHA also will host three in-person fundraising events — starting with the 10th Annual Monrovia O2breathe Walk 2023 on Nov. 4 in California, and the El Paso O2breathe Walk 2023, in Texas. On Nov. 11, the 16th Annual Dallas Zebra PHest O2breathe Walk 2023 will be held, also in Texas.

To help advocates, the PHA Awareness Month toolkit also is available. It’s a comprehensive resource with profile and cover photos, email signatures, hashtags, and more to help with social media messaging. Those interested may share events and stories on Instagram, Facebook and X (formerly Twitter), using #PHAwarenessMonth and #LivePHearlessly hashtags.

No two journeys with PH are alike, and each person’s story can teach us about the impact of living with PH and how to improve the lives of patients and families affected by it.

Elsewhere, PHA Canada is calling on PH friends and allies to spread PHAwareness by getting organized for the Annual 6-Minute Walk for Breath, happening on Nov. 18.

“Participants are encouraged to walk for 6-minutes while wearing a mask and holding weights to feel what it is like for PH patients to do the walk,” the event’s webpage states.

Additionally, the #LifeInPurple campaign focuses on the challenges of life with PH. It was created with the recognition that “no two journeys with PH are alike, and each person’s story can teach us about the impact of living with PH and how to improve the lives of patients and families affected by it,” according to the webpage.

Support can be shown by wearing purple in honor of PH or hosting a virtual event. Use @PHACanada and the hashtag #LifeInPurple when sharing PH awareness activities on social media. PHA Canada’s calendar can help those interested to track awareness month events.

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