March 1st 2022 | 5 minute read
Ally Chacon
Ally, caregiver to her brother, Jack, describes the unique way that her family advocates for HAE in her town's annual St. Patrick's Day parade.
My younger brother, Jack, was diagnosed with Hereditary Angioedema (HAE) at the age of four years old. While I personally do not have HAE, I've been a caregiver and advocate for Jack since 2009. Shortly after Jack's diagnosis, our mom became connected with an HAE family in Syracuse, New York, who hosted their own 5K every Mother's Day to raise awareness for HAE. Our mom immediately decided that we would be making the trip from New Jersey to participate in this race.
That's when "Team Jack" - a group of close family and friends who made the trip with us and joined us for the race - was created. We accepted donations to raise funds for the HAEA and even made matching t-shirts for all of us! Over the years Team Jack has grown and grown, participating in (and even hosting!) every HAE IN-MOTION® event we could! However, there's always room for growth and exposure, so we decided to do something bigger. Raised in a large and very Irish family, Saint Patrick's Day has always been one of the most important holidays of the year for us. Back in 1995, both my uncle and my grandfather helped create the Union County Irish American parade committee. By 1997, a county-wide parade was taking the streets. My family has participated in the parade our whole lives! I've marched as a Girl Scout and an Irish dancer, while my siblings marched for our local Little League. My grandparents have done everything from announcing at the Grandstand, to marching with us when they were working in politics.
In 2019, we decided that Team Jack needed its own section to march with, so our mom reached out to the US HAEA for help. With their aid, the connections my family has, and some serious building skills from my mom's husband, Team Jack was in the parade! We marched with every friend and family member who could come from all over. HAE families, friends, and HAEA Staff from New York, Ohio, Florida, and all over New Jersey were able to join us! We all wore Team Jack shirts and walked the parade route through my hometown. We even had our own float decked out in HAEA banners and signs!
Advocacy has been a huge topic for me and my family since Jack got diagnosed. From school fundraisers, to town-wide events, to the time I was a contestant on Food Network's "Chopped", I'm always trying to bring light to HAE and what others can do to aid the healing and overall quality of life for individuals with HAE. I could write a book of ways to advocate for yourself or the person you care for who has HAE!
I strongly believe that your voice is your strongest tool in advocacy. Make a video for social media, ask friends to share it, and be heard by people around the world. Visit your local EMS, fire station, or emergency room, and bring one of the HAEA ER toolkits with you! As a caregiver, one of the biggest things you can do is support the person you love. Small things like bringing snacks, watching movies, or simply being in their presence while they're having an attack can have a huge impact on the happiness and well-being of an individual with HAE. At 23, I'm still learning more and more about HAE; how I can help, how I can spread the word, and how I can make life easier for my brother. The Hereditary Angioedema Association (HAEA) has created an incredible world for individuals with HAE and family members alike where we can not only connect with people who know our stories, but also receive all of the tools we need to educate the world. I'm endlessly thankful to have this support system for my brother and for the friends I've met over the past 12 years!