CEO Update: Sky’s the Limit for PHA Programs and Services in 2022

Dear friends,

The beginning of a new year is always an exciting time. For me, 2022 marks the start of my second year at the Pulmonary Hypertension Association. When I joined PHA last January, I was looking forward to getting to know the staff, the board of directors and members of pulmonary hypertension community.

Although the pandemic prevented me from meeting only a few of you in person, everyone has been warm, inviting and willing to share their stories. That has touched me in many ways and made my commitment to PHA even stronger. I’ve heard stories of extreme sadness but also resilience, perseverance, and triumph. Those stories were very inspiring and made me feel that everything is possible if we set our minds to it.

In the past year, I’ve developed a deep sense of pride in the PHA staff who keep reaching new heights and raising the bar on the quality of programmatic output, fundraising goals, and the support and education we provide to our community. Similarly, the volunteer leaders have been relentless in their pursuit of mission. Board Chair Colleen Brunetti is a fantastic partner who has taught me firsthand the struggles PH patients face and how to overcome them with hope and a “I’m not giving up” attitude.

When I joined PHA, my No. 1 goal was to ensure that patient care was at the center of our activities. I am thankful the staff quickly embraced that vision and made deliberate decisions with that in mind. That includes decisions about patient education, internal organization to deliver better results, and the factors behind the continuing pause of in-person events and meetings.

Operating in a pandemic
As I reflect on the past year, I can’t help but observe the many ways the pandemic has affected PHA and our community. Although the goal posts are constantly moving, along with infection rates and new variants, we can still begin to plan a return to a new normal where we can interact with each other in person in safe and socially responsible ways.

While the PHA office remains closed for the foreseeable future, we continue to be as productive, if not more so, working virtually with new rules of engagement and building a culture based on the new reality. PHA is truly a national organization with staff in many states working in unison to accomplish our mission. We now have new talents and a diversity of experiences that weren’t possible before the pandemic. That silver lining makes PHA stronger and more reflective of the communities we serve.

Throughout the pandemic, PHA’s main achievement was keeping the community together and informed with scientifically accurate resources, even as the data changed or new information emerged. We will continue to address our community’s concerns in 2022, as we have for the past two years. This year, we’ll focus on strategies for safely returning to in-person care and adhering or starting new therapies, despite emerging obstacles.

Our corporate partners have also been a critical component to our success, and they’ve stuck with us through thick and thin, which is also a testament to their commitment to our patients.

Looking ahead
I am looking forward to 2022 and our work on our main focus topics: early diagnosis, treatment access, quality of life, research funding, return/adherence to care. Some have been on the top of our priority list for years, and some are pandemic-related. We plan to tackle them from many angles simultaneously to converge the messages from all our activities: advocacy, patient support, patient and professional education, and fundraising. Our voice will become louder and go further.

One of the things that most excites me is the PHA 2022 International PH Conference and Scientific Sessions in June. We’re planning PHA 2022 as an in-person event with several safety measures and virtual options for those who can’t or don’t feel comfortable attending in person. The Conference Planning Committee issued a call for proposals to enrich the program and hear from those whose experiences haven’t been shared in the past. I am excited to hear from this new slate of speakers.

This will be my first conference, as it will be for many of the PHA staff. I am really looking forward to being among the community and seeing the impact of our work in real time.

A new decade
Joining PHA during its 30th anniversary gave me an opportunity to review what has been achieved and what lies ahead. It is difficult to focus on long-term planning in such a fluid and constantly changing situation, but our history shows that we always get back up and move forward. I don’t see the pandemic changing that.

We will emerge stronger, if we can overcome this, and we will. The sky’s the limit. I’m proud of our community’s response to our programmatic changes to keep them safe, deliver up-to-date education and provide much-needed support.

As PHA enters a new decade, we will continue to do all we can to extend and improve the lives of people affected by PH. If you have ideas to share for PHA’s 31st year and beyond, let us know.

Until we can meet in person, I look forward to hearing from you.

With gratitude and respect,

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