As November begins, please join the Pulmonary Hypertension Association in raising awareness for pulmonary hypertension. Pulmonary Hypertension Awareness Month is an opportunity to intensify our efforts to raise awareness of PH risks factors and symptoms and the need for earlier diagnosis.

This year, we’re looking for anecdotes, tips and quotes about how you “Live PHearlessly” in the face of PH.

During Pulmonary Hypertension Awareness Month, we’ll share those stories as part of our annual campaign to increase understanding of PH. 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.

We encourage you to share your experiences directly with PHA to help us put a face on PH. We also encourage you to explore our digital toolkit to help you spread awareness through your own social media and personal connections.

Our PH Awareness Month toolkit includes shareable resources, such as infographics, social media profile and cover photos; an email signature; and sample social media posts.

The toolkit also includes graphics and sample social media posts for CTEPH Awareness Day on Nov. 8 and PHA’s Day of Action on Nov. 15.

For CTEPH Awareness Day, PHA will draw attention to chronic thromboembolic pulmonary hypertension, a rare form of PH caused by blood clots in the lungs that harden over time and impede blood flow. We’re promoting three CTEPH-related videos, including an interview with Mark Porter about his diagnosis and treatment journey. The other two are English and Spanish versions of “10 Important Facts About CTEPH.” We’re also hosting a nationwide virtual CTEPH support group on Nov. 9. If you’re affected by CTEPH, please download the videos and join the support group.

For the Advocacy Day of Action, we encourage you to share your challenges about supplemental oxygen access with PHA, local news outlets and Congress. Your stories can help improve access to supplemental oxygen for those with PH and other lung diseases.

We’re working hard to raise PH awareness in other ways. In addition to our social media and advocacy outreach, our PH Awareness Month campaign also includes education and fundraising elements.

Join us Nov. 30 for a new PHA Live webinar about “Hope Through Research in Pulmonary Hypertension” collaboration with Fundación Contra la Hipertensión Pulmonar, a PH organization from Spain.

And if you’re in these areas, we’d love to see you at these upcoming fundraising events: O₂breathe walks on Nov. 4 in El Paso, Texas, and Monrovia, California, and the Dallas Zebra PHest O2breathe Walk on Nov. 11. Our GivingTuesday fundraising efforts on Nov. 28 also will be part of our awareness month outreach.

As you know, our efforts to increase understanding of PH continue all year, thanks to our members, the PHA staff and our Board of Trustees. Sadly, the PH community recently lost two former board members: Frank Cann and William “Bill” Hoff. Both worked tirelessly on behalf of the PH community.

Cann, 58, who died Aug. 10, stepped down from the board and as Development Committee co-chair in 2020. He was committed to charities that touched his heart, and he advocated for legislation changes in Massachusetts to benefit people with PH in honor of his son-in-law Ernesto, who has PH. He truly loved the PH community and wanted to be a force for good, and he was.

Hoff, who died Sept. 25, was a longtime finance committee member and later served on the board as PHA treasurer. During his time with PHA, Hoff was critical to guiding the organization’s financial planning and success. He was a keen observer of detail and financial dynamics and could always be counted on to ask the right insightful and challenging questions. He was a great asset and supporter of PHA with strong financial acumen.

PH will mourn them both, as well as the many others from our community who are no longer with us. At the same time, we celebrate how far we have come to extend and improve the lives of those affected by PH by all those who have volunteered and those who continue to do so.

During PH Awareness Month and beyond, please continue to share your stories and questions with me. As I always, I look forward to hearing from you.

With gratitude and respect,

Matt J. Granato, LL.M., MBA (he/him)

President & CEO