CEO Update: You Are Making a Difference

Dear Community Member,

As Pulmonary Hypertension Awareness Month closes and the holiday season approaches, it is a time for family, reflection, anticipation and gratitude.  I want to personally thank you for being a part of the pulmonary hypertension (PH) community and for all you do to strengthen our Community’s resolve to support important work that the Pulmonary Hypertension Association (PHA) does to save lives, fuel personal passions and empower fellow Community members to confidently face challenges that confront them.

A little more than a year ago, I had the privilege to join the Community as PHA’s President and CEO. I was eager to attend the 2016 PHA International PH Conference and Scientific Sessions where I met hundreds of people living with PH, their loved ones and families, and their personal and professional caregivers. Since that time, in my travels to PHA educational, support and fundraising events across the country, I have continued to be inspired and energized by the Community’s commitment to one another, both in the United States and around the globe.

This year, I’ve been fortunate to work with your PHA Board of Trustees and its Strategic Planning Committee, chaired by Mitch Koppleman, to complete PHA’s first extensive strategic planning process. We solicited input from more than 13,000 community members and developed a strategic plan that aligns your input and needs with our programmatic key focus areas. We began working on this plan to better serve the PH Community earlier this year, and already it is having an impact in furthering our mission – extending and improving lives of people affected by PH. Here are some highlights of what we have achieved together this year:

  • The Community mobilized by sending more than 2,000 messages to Members of Congress to ensure that any healthcare reform efforts included protections important to PH patients;
  • Our peer support programs, empowered by over 300 support group volunteers and 50 PHA PHriends volunteers, helped more than 5,000 people receive the support and resources they needed to face any challenges along their journey;
  • We provided critical patient education to more than 4,300 members of the community through our Living with PH brochures, Envelope of Hope, and PHA on the Road series and launched our first dedicated comprehensive pediatric resources page on PHAssociation.org;
  • Through the generosity of our donors, 14 principle investigators and research initiatives — including four in pediatric PH — received funding to advance their work in PH. In addition, the Pulmonary Hypertension Association Registry (PHAR) increased the number of patients enrolled to 425 and had its data used in three abstract presentations at the American Thoracic Society and American College of Chest Physicians;
  • We increased the number of PHA-accredited Pulmonary Hypertension Care Centers and Regional Clinical Programs to 55, including eight pediatric centers, which now cover an estimated 11,000 PH patients;
  • Our efforts to promote quality patient care were advanced significantly with more than 8,700 health care providers participating in or using our medical education programs including Preceptorship, OnDemand, Online University, and PHPN Symposium, which enjoyed a record 492 attendees;
  • Community members, working with our Development staff and Board members, led our 54 PHA O2 Breathe™ and grassroots events, which engaged nearly 11,400 participants in local communities large and small nationwide. Thanks to Robin Doerge — a parent of a PH patient — who issued a $10,000 challenge that matched dollar for dollar any gift made to PHA on Giving Tuesday, we received more than $36,000. This represents a five-fold increase over what PHA has raised on Giving Tuesday in the past;
  • Critical to all our successes was the migration of our website to a mobile-friendly platform and the initiation of our first major upgrade in PHAssociation.org, as well as the expanded use of social media, which resulted in more than 23,340 Facebook likes, 4,860 Twitter followers, 1,490 Instagram followers and nearly 2,400,000 PHAssociation.org pageviews so far this year.

In anticipation of the year ahead, I look forward to our seeing each other at PHA’s 2018 PH International Conference and Scientific Sessions in Orlando, Fla. This will be a powerful opportunity for all of us to meet more members of our expanding community, reconnect with others and for us to learn from your experiences and needs as you live your best life as a member of the PH community. In the meantime, PHA will remain focused on the mission that brings us all together.

Thousands of people, like you, are conquering PH in inspirational ways, as demonstrated this month in our The Right Heart™ public awareness campaign, which features stories from our Community. I encourage you to join the conversation, learn what great things we are achieving together and to become more engaged. Through PHAssociation.org and our free weekly PHANews, we keep the Community updated on developments and news impacting individuals living with PH, families and loved ones, PH health care professionals and the many donors and volunteers who support the PH community.

We are grateful that you are a part of the growing PHA Community! Please feel free to contact me at BradWongPHA@PHAssociation.org if you have any questions or concerns, as I always welcome your feedback.

Sincerely yours,

Brad A. Wong
President and CEO

 

2017-12-06T20:55:28+00:00 December 6th, 2017|