From Jess Myers,  Communications and Advocacy Manager, US HAEA

Camp Brady: An HAEA Weekend to Remember

The US HAEA community came together last month for the very first Camp Brady at The Painted Turtle in Lake Hughes, CA. This special weekend was full of joy, camaraderie, and shared experiences. More than 130 community members representing 27 families gathered to build meaningful relationships with HAEA friends who are experiencing a similar journey.

Perhaps most importantly, Camp Brady provided a medically safe environment where children could fully participate in every activity, allowing parents and caregivers the chance to relax, interact with other US HAEA families, and watch their children enjoy being kids without hesitation or worry.

Throughout the weekend, camp was alive with energy as children explored a wide variety of activities, including art, crafts, boating, archery, ziplining, woodshop, and dancing. Each day was filled with laughter, confidence-building, and establishing new friendships that will extend far beyond camp. Based on the success of this inaugural event, we look forward to including even more families in a future US HAEA Camp Brady weekend. We are incredibly grateful to everyone who worked diligently to bring this unique, youth-focused event to life!

Empowering the Next Generation of Leaders – HAEA Youth Programs

The 2026 US HAEA Youth Leadership Training weekend brought together 25 teens and young adults who are members of our Youth Leadership Council or serve as Social Media Interns. Over the course of two days, participants engaged in hands-on workshops focused on media training and podcasting, advocacy education, social media messaging, and communicating in poised and professional manner. Each session was designed to equip participants with the tools they need to represent themselves and the US HAEA community.

This gathering not only strengthened leadership skills but also deepened relationships across our community. We are incredibly proud of these young leaders and can’t wait to continue this journey alongside them.

“To be part of the HAEA community to me is having one whole big family and having friends that understand what you’re going through, and also knowing we are helping to make strides in the HAEA community. I would tell anyone interested in getting involved in the HAEA youth programs that once you join, you are brought into this amazing community where everyone is so friendly, and you gain lifelong bonds with people and meet new people every year. “ – Caroline, age 16

Expanding Support: HAEA Mental Health & Wellness Program

A brand new program for 2026, the US HAEA Mental Health & Wellness Program is designed to support the emotional well-being of individuals and families affected by HAE. Through access to virtual therapy support services, the program has helped over 30 community members navigate the mental and emotional challenges that can come with living with a HAE.

“Therapy gives me a space to work through the stress, limitations, and long-term uncertainty that come with managing HAE. A lot of the impact isn’t physical day to day, but the constant planning around medication, the worry about future medical decisions, and the frustration of opportunities I’ve had to rule out. Having consistent mental health support helps me build healthier ways to cope with that pressure, feel more confident navigating big life choices, and overall reduce how much space HAE takes up in my mind. This grant makes it possible for me to access that support consistently.” – Abby C.

HAEA Community Blog: Sharing Stories, Voices, and Perspectives from the HAE Community

The HAEA community blog features personal narratives detailing the daily struggles of managing HAE and stories of resilience and advocacy. The HAEA Community blog has empowered people with HAE, their caregivers, and other HAE advocates to navigate their HAE journey with confidence.

Chasing Your Dreams: Pursuing an Active Career With HAE

This HAEA Community blog highlights Sonia and her journey of growing up with HAE while overcoming limitations to pursue a physically demanding career of horseback riding. Despite early restrictions and constant caution, she highlights how access to a treatment that fit her needs opened the door to new opportunities, allowing her to follow a lifelong passion for horseback riding. Now working full-time in the horse training industry, she reflects on how advancements in HAE care have made it possible to live an active, fulfilling life and achieve dreams once thought out of reach. Read here!

The Privilege of Being a Caregiver

HAE Caregiver, Sage, shares his personal journey from childhood friend, to husband and caregiver, for his wife, Carlie, who lives with HAE. Through learning to support her during attacks and in everyday life, he reflects on how caregiving is not a burden, but a meaningful privilege rooted in love, partnership, and the small acts that help her live beyond HAE. Read here!