HAEA Youth Advocate, Ally, shares her powerful journey with HAE and how the HAEi LEAP Program empowered her to grow as an advocate. Through hands-on workshops and a global community, she gained the tools and confidence to lead change and support other young people navigating HAE!
Hi! I’m Ally Blaszynski, a 21-year-old living with Hereditary Angioedema (HAE). My journey with HAE began when I was just five years old, but it took 11 long years to receive a diagnosis. As the first in my family to be diagnosed, the path was often confusing, isolating, and uncertain. Everything changed when I found the Hereditary Angioedema Association (HAEA). From the moment I connected with them, I felt empowered to advocate for myself and others facing similar challenges. That passion for advocacy has only grown stronger with time.
Recently, I had the incredible opportunity to attend the HAEi LEAP Program, a 3-day in-person workshop followed by a 12-week online course designed to help young people become stronger HAE advocates. It was an experience that opened my eyes, expanded my skills, and connected me with inspiring individuals from around the world.
What Is the HAEi LEAP Program?
HAEi is a global organization that supports HAE patients and local member organizations by increasing awareness, improving access to treatment, connecting patients with physicians, and advancing research. Their Youngsters Program is designed to teach youth how to become effective advocates in their communities.
The LEAP Program (Learn, Experience, Advocate, Pave the way) includes a 3-day intensive workshop and a 12-week online curriculum. Participants learn advocacy techniques, develop professional skills, and complete a personal project in collaboration with their member organizations. My project focuses on creating better resources for HAE youth transitioning to college life which is a crucial time filled with both opportunity and new challenges.
What I Learned
Day 1 started with the basics of advocacy: understanding what works, what doesn’t, and why preparation, clarity, and transparency are so important. We learned about time management, how to balance our projects with daily responsibilities, and the art of writing effective project proposals.
Day 2 focused on public speaking. As someone who doesn’t naturally thrive in front of crowds, I was nervous but eager. We practiced telling our stories and learned how to engage with pharmaceutical companies and other large organizations. I even got to share my personal experiences living with HAE in the U.S. and discussed ways the industry can better support patients like me. It was humbling to hear similar stories from other countries and to realize that while our locations differ, our challenges are strikingly similar.
Day 3 was all about project planning. We collaborated in small groups, brainstormed our ideas, and helped each other refine our goals. It was powerful to see how diverse our projects were, yet how unified we were in our purpose: to build a stronger, more connected HAE community at home.
What I Took Away
This experience gave me more than advocacy skills. It gave me lifelong friendships with incredible people from across the globe. Some were patients, others were caregivers, but all of us shared a common drive to make a difference in the HAE community.
I left feeling inspired, empowered, and more confident in my ability to lead change. The tools I gained from the LEAP Program will stay with me for life, helping me grow both personally and professionally.
What’s Next?
The journey doesn’t end here. Over the next 12 weeks, I’ll be completing the online portion of the LEAP Program while working on my college resource project. I can’t wait to share updates and show how advocacy, when fueled by knowledge and community, can truly transform lives.
Stay tuned!
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