Executive Corner

Update from the CEO

It’s hard to believe we are halfway through the year. As many of you know, 2024 has required the HFA Board and staff to step up and face multiple challenges. Throughout this process, the chair, Luke Runion, and I have tried to be transparent about where HFA is as an organization and where HFA is headed. As mentioned earlier this year, the Board asked that staff first focus on executing on Symposium. I am happy to say that the response from attendees was overwhelmingly positive and we had an opportunity to have some excellent conversations with attendees and past leaders. These conversations were very important in creating a structure for the remainder of 2024 and planning for next year’s Symposium in San Diego.

The big question is “Symposium was finished back in April, what are you going to do next? Our community still has needs that go way beyond an annual meeting!” My response is that we took time to breathe after Symposium followed by planning out our schedule for the remainder of the year. This will help our organization to focus on a plan and move forward together. Following are some highlights of our upcoming plans:

Blood Brotherhood and Blood Sisterhood: We are working with a blood brother and blood sister to bring back both programs. The first step will focus on starting up regular calls with a focus on sharing and fostering community. This will happen within a broader context of revisiting all aspects of each program to bridge generations and assure that blood brothers and sisters feel they are part of a broader community and learn from those who have gone before them. We are also planning a special blood brotherhood and blood sisterhood event in conjunction with the Annual Patient Fly-in and Young Adult Advocacy Conference in September.

Education: Since completing the biggest educational event of the year, the focus is now moving toward a restart of our other efforts and bringing a new focus to Learning Central, which deserves some well-deserved TLC. First on the list is kick-starting our work with the Centers for Disease Control (CDC) and assuring we meet the desired outcomes scheduled for the current federal fiscal year. At the same time, we will evaluate new Learning Management Systems with a goal of launching a new platform in 2025 that will provide a much smoother experience and allow for saving of progress and the ability to provide recommendations for other courses that might be of interest. In addition, our education team will be supplemented and our focus will remain Blood Brotherhood and Blood Sisterhood, alongside our annual patient fly-in.

Advocacy: The newest addition to HFA, Mary Catherine Moffett, began her work at HFA by attending Symposium and was overwhelmed with the warm welcome she received from the community! Because advocacy is a cornerstone of HFA, she is taking a very measured approach to our advocacy efforts and ensuring that HFA is known as THE patient voice for bleeding disorders. Currently, the advocacy team is focused on the patient fly-in, Young Adult Advocacy Summit, and working with various state Member Organizations in addressing their legislative and advocacy needs. Long term, Mary Catherine would like to empower community members to be strong advocates and known for the effectiveness of delivering our message. Lastly, the Advocacy team is also focused on various efforts surrounding health equity and projects to ensure everyone has the same access to quality care.

Helping Hands: During Symposium, HFA leadership heard from the community regarding the importance of Helping Hands and its creation in the early days of the organization. I was asked to investigate ways of starting the Helping Hands program again on a limited basis so HFA can provide some degree of assistance to community members experiencing hardship. I’m excited to share that the relaunch of Helping Hands is in the early stages and will be formally announced later this year. 

As mentioned earlier, HFA has had a challenging year, to say the least, but we are beginning to “round the corner” and make progress with our reemergence as the patient voice in the bleeding disorders community. I am confident we will continue to make progress and move forward as an organization that understands and anticipates the needs of your community and is there when assistance is needed.

Sincerely,

Dan Kelsey, President and CEO