In early September, three HAEA Youth Leadership Council members had the privilege of speaking on specific panels during the Youth Fest 2023, part of the annual Rare Fair conference in Research Triangle Park, North Carolina and online. Launched in 2018 as a 100% virtual event, the Rare Fair was the original virtual event for the international rare disease community, seeking to connect rare disease patients, families, and other stakeholders across the globe. In 2023, for the first time, the event was both virtual and in person. HAEA’s Community Engagement Specialist, Lisa Facciolla, was in attendance and had an opportunity to interview each Youth Leadership Council Member to hear more about their experiences at the event!
Meet the HAEA Youth Leader Panelists:
Ally Chacon (25 years old)
Ally has been a caregiver and advocate for her younger brother, Jack, who was diagnosed with HAE at the age of four. Ally is a two-time HAEA Youth Social Media Intern, a passionate legislative advocate youth leader, and an advocate representing the caregiver and sibling community. Ally shares the strength she finds in the community by spreading kindness and compassion wherever she goes. She served on the Sibling Panel at the Rare Fair bringing attention to the unique experiences and needs of siblings of those diagnosed with a rare disease.
Noah Davis-Logan (19 years old)
Noah was diagnosed with HAE as a young child and has several family members with HAE, including his mother and uncle. Noah served on the Advocacy Panel at The Rare Fair, sharing his experience as an advocate for the needs and experiences of himself and others with HAE. Noah has also previously served as an HAEA Youth Social Media Intern, is a Regional Youth Advocacy Leader, and has been a member of the HAEA’s Youth Leadership Council for seven years. Noah currently attends college at La Salle University and participates in a variety of sports, including track and field.
Maddie Fitzgerald (19 years old)
Maddie was diagnosed with HAE at a young age, and her father also has HAE. With a secondary diagnosis of complex regional pain syndrome, Maddie suffers from severe pain when walking, which sometimes causes her to need a wheelchair and accessibility accommodations. It was for this reason that Maddie was a good fit for the Accessibility Panel at the event. Maddie is a two-time HAEA Social Media Intern, is a Regional Youth Advocacy Leader, and has been an active member of HAEA’s Youth Leadership council for many years. She currently attends Duquesne University and can effectively manage her HAE. She has participated in a variety of sports, such as cross country and soccer.
Q&A with the HAEA Youth Leadership Council Members at The Rare Fair Youth Fest 2023
Q: Can you please explain The Rare Fair Youth Fest and what we are trying to accomplish?
Ally:
We are currently attending The Rare Fair, an international rare disease awareness event on behalf of the Hereditary Angioedema Association (HAEA). We have a really great group of youth advocates, patients, and caregivers in attendance to show the world a little bit more about the mission and activities of the HAEA. The Rare Fair is relatively new, and the goal is really to create a sense of community within every rare patient organization and bring about some new friendships and relationships within other rare disease communities.
Noah:
Rare diseases may be uncommon, but the experience of having a rare disease, especially as a child and teen, are very similar. I’ve loved meeting other people with different conditions because what we go through is very similar. I think this event is a great place to share our stories and have open and honest conversations. Everybody’s voice matters, and everyone’s stories are important, and this event allows us to share.
Q: What was your role at this event? Talk a little bit about what it was like to participate in your unique panel. What does it mean to you to speak on behalf of this topic?
Maddie:
I spoke on a panel on accessibility, which was super fun. It was me and three other people, and we all got to talk about physical and virtual accessibility and how we all navigate these spaces. This experience was cool because I got to talk with other young people who use wheelchairs, which is an opportunity that isn’t very present on my college campus or at my high school. It was exciting to be able to make those connections with others.
Ally:
I was given the opportunity to speak on a panel that focused on young caregivers and specifically siblings. It was really a great experience to be able to sit around a group of other sibling caregivers who understand the struggle of wanting to be an individual, but also wanting to dedicate a big chunk of your life to helping a loved one. It's always an emotional time to meet other caregivers, especially young ones, because we have dedicated a lot of our youth to our loved ones and other patients that we've met along the way. Overall, it was an amazing experience.
Noah:
I was here to speak on a panel about how to become an effective youth advocate, which is so important because we are the future of the rare disease community. I was with a very good group of panelists, and we all got to share our experiences. We realized that having this opportunity to share is so important and necessary to continue moving advocacy forward. Whether it’s a small circle of friends, a whole class, or a larger event, advocacy has a lasting effect, and you will get to see the change in the world. We are also building this community and developing a bond that helps us all live beyond our diagnosis.
Q: The HAEA has a large presence at The Rare Fair event with many members attending. Have you observed any differences with the HAE community versus the other rare disease communities?
Ally:
I think that this really puts into perspective just how established the HAE community is, because the representation here for the HAE community is a lot bigger than I think any of the other diseases that have been introduced throughout the weekend. It just goes to show that our member organization is really doing everything they can to provide the most supportive, best community they can for caregivers, patients, doctors, and everyone.
Noah:
I do think that we are a very strong organization, and I mean that throughout various socioeconomic factors, we have a lot of differences, but no matter what, we are all still a community. We all come together in one place to support events like this. Whether it's a small event or a major event, the most important thing is advocacy. We're still making a change; we're still driving change. I think it's very important that we show up to events like these to share our experiences and see our HAEA family again.
Q: What drives you to use your voice as an advocate for the HAE community?
Ally:
I think it's incredibly important for any caregiver to have a voice, but when it comes to youth caregivers, and specifically siblings, it's huge because a lot of times, there's nobody closer to you in your childhood than your siblings. My family grew up incredibly close. My siblings are some of my best friends. And to see everything my brother had gone through with his journey of HAE from a diagnosis to living alone on a college campus three hours away is an amazing progression. It shows what advocacy can do, what education can do, and what being part of a bigger community can do for the entire family.
Noah:
Speaking at any event is always a big honor and a pleasure. I think using my voice to drive change is worth repeating because of how monumental HAE is to my life. Thinking about my experience as a child and knowing that now kids can actually get medication. Seeing those changes and seeing legislation that comes about makes me proud. I am proud that I can say, "I'm a little bit of the reason why things have happened."
Q: How do you feel as though HAEA Youth Programs have impacted your HAE journey?
Maddie:
I remember being at my first Summit in Minneapolis and seeing the Youth Leadership Council on stage and I told my mom that I wanted to be a part of that. She said, “Are you kidding me? You’re going to go on stage?” I thought there would be other things to do, but now it has gotten to a point where I am on stage, and I would have never imagined that for myself. I am happy that I get to share my story and be a part of this.
In summary,
HAEA Youth Advocates, Ally, Noah and Maddie, continue to inspire the HAEA community. It’s amazing to see their positive influence spread beyond our organization at the annual Rare Fair conference’s Youth Fest 2023. Through various panel discussions, they shared powerful perspectives as young adults impacted by HAE.
A caregiver for her younger brother, Ally spoke on the sibling-specific panel about how advocacy, education, and community can empower caregivers and allow them to be part of a greater support system. Noah and Maddie, both diagnosed with HAE at an early age, served on the advocacy and accessibility panels, respectively, to provide insight into how their generation can connect with others, live beyond their diagnosis, and use their experiences to drive change.
Although all are individually unique, Ally, Noah, and Maddie’s stories and collective voice have made a difference, not only at the Youth Fest, but within the rare disease community as a whole.
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