HACA’s annual Chapter Education Day returned to Northern Virginia Community College on Saturday, March 22.

This year, the event featured one main track, with sessions on federal advocacy, emerging therapies and funding a chronic condition.

Matt Delaney of the National Bleeding Disorders Foundation kicked off the day with a session on what’s happening on the federal level, including a recap of Washington Days.

His session was followed by an update on emerging therapies for bleeding disorders with Dr. Gary Kupfer of Georgetown University Hospital HTC.

The final session for the day featured Bill Wilbert of Biomatrix discussing financing a chronic condition.

During the lunch break, participants visited with event sponsors. Thank you to this year’s exhibitors: Accredo, Bayer Healthcare, Biomatrix, CVS Specialty, CSL Behring, DrugCo, Genentech, Novo Nordisk, Octapharma, Optum, Pfizer, Sanofi, Soleo Health, and Takeda.

A special thanks as well to Briana Taylor of Optum and Linda Pollhammer of Pfizer for leading programs for the kids, and to Matt Stone as well for jumping in and helping with some activities in the down time! Childcare was provided by White House Nannies.

HACA’s annual meeting also took place during the event, and chapter members Kate Greene and Ben Marcus were approved as new board members for 2025-2027 starting in June. HACA officers for 2025-2026 will be Shawna Gray, president; Ben Hubbert, vice president; Kathy Krug, secretary; and Katherine Vargas, treasurer.

We also recognized our outgoing board members: Daniel Hay, who has served for six years and has been president for almost four years; Mallory O’Connor, who has served six years and taken on the roles of secretary and vice-president during that time; and Ashley Hay, who served four years. Their terms end on May 31.

Thank you to all the HACA members who spent the day with us! We are making some changes for 2026; stay tuned for more information later this year!

Advocates from throughout the country gathered in Washington, DC, March 5-7 for the annual Washington Days advocacy program led by the National Bleeding Disorders Foundation. HACA members from Virginia and Maryland were among the more than 400 advocates that met with lawmakers on Capital Hill for the annual event. 

This year's policy asks included: 

Support of the HELP (Help Ensure Lower Patient) Copays Act - This bipartisan legislation would stop co-pay accumulator adjustors and copay maximizer programs in health insurance policies. While many states - including Virginia - have passed legislation outlawing accumulator adjustors, Congress needs to act to address all private plans. Virginia Sen. Tim Kaine and Sen. Roger Marshall of Kansas introduced the legislation in the Senate in early March, so advocates asked their senators to sign on and their representatives to consider co-sponsoring a bill in the House. 

Support of federal bleeding disorders programs - Hemophilia treatment centers receive funding from HRSA, CDC and NIH that support research, care and public health monitoring for bleeding disorders. We asked lawmakers to continue to support these critical programs. 

Reject health care cuts and policies that create additional red tape and barriers - Congress is considering major changes to critical health insurance programs such as Medicaid. We asked that lawmakers not implement any cuts to health care so people can maintain their health coverage. 

HACA program manager Robin Monin and her family attended the Hemophilia Federation of America's recent Symposium

This year, I had the opportunity to join others in the bleeding disorders community at the HFA Symposium in San Diego, CA. It was one of the best symposia I’ve attended in years. The kids had an amazing time at camp, where they got to connect with other children who have bleeding disorders. They enjoyed activities like swimming, pickleball and scavenger hunts.

For the adults, there were many insightful talks, and a few of my favorites included "Before You Kick the Bird Out of the Nest," "2025 Healthcare Concerns" and, of course, "On the Horizon."

"Before You Kick the Bird Out of the Nest" focused on how parents can prepare their children for college and adulthood. The session was presented in a panel format, featuring a father and son who discussed a course that will soon be available on HFAlearning.org. This course aims to guide both kids and parents through the exciting—and sometimes challenging—transition to independence.

During the "On the Horizon" session, I learned about some exciting new developments in the treatment of bleeding disorders. Gene therapy is on the way out, and subcutaneous (SQ) treatments are becoming the new focus of clinical trials. It’s thrilling to think about the advancements on the horizon for the bleeding disorders community!

The symposium wrapped up with an incredible party on the front lawn of the hotel, complete with yard games, delicious food, and great music. A huge thank you to HFA for such a memorable and enriching experience!

HACA currently has two active scholarship applications open for chapter members. 

The first is the George and Linda Price Scholarship, which is offered every year to help with college, graduate school and trade school expenses. The application for the 2025-2026 school year is now available on the HACA website. Deadline to submit the application is June 1. 

This scholarship, created in the mid-2000s, was named to honor the late George Price and his wife, Linda, who were both involved with the chapter and served as board members after their son was born with hemophilia B. George passed away in 2015, but Linda is still actively involved in the chapter and volunteers her time to score scholarship applications for HACA!  

The Qualley Scholarship for national meetings is also taking applications through May 1 for the National Bleeding Disorders Foundation's Bleeding Disorders Conference in Colorado August 21-23. 

Scholarships may be used to help defray the costs of airfare/mileage, hotel accommodations, and annual meeting registration fees. The maximum award will not exceed $1,000 for an individual or $2,000 for a family of two or more persons. The applicant will be responsible for all meals and other incidentals.

Click here for more information on both the Price and Qualley scholarships. 

Camp Youngblood at Camp Holiday Trails is coming up July 13-18. Registration ends on April 23 and all paperwork is due to camp by June 6. 

This weeklong event is designed for kids ages 7–17 with inherited bleeding disorders, their siblings, and children of community members in HACA and VHF's coverage areas. Kids will  enjoy a variety of activities including swimming, horseback riding, zip lining, and campfires, all while making lasting memories in a safe and supportive environment.

The process starts with a pre-screening, so HACA and VHF staff can confirm eligibility; click here to access the form. Once your eligibility has been approved, we will reach out to you with a link to fill out the paperwork on the camp website. 

If you have any questions about the process or camp itself, you can reach out to Caitlin Carroll, MSW, Director of Programs at CHT. 

Want to register for a HACA event? You can do that through our weekly Chapter Connection email, or you can go here on the HACA website to check out the calendar of events.