UNION, NJ – Twelve-year old Jack Chacon has already been working for years on his fundraising and advocacy for Hereditary Angio Edema (HAE).
Team Jack has raised over $25,000 for the HAE Association (HAEA) from various events hosted in the past few years.
Chacon continues to actively serve on the HAEA’s Youth Leadership Council, allowing him the opportunity for advocacy work and to meet other kids with HAE.
"It's important for young people to be involved because we are the future of the HAEA,” said Chacon. “It's also important to advocate for yourself and others. It feels good to know that I am helping other people, especially other kids like myself."
Chacon was diagnosed with HAE at the age of 4. HAE is a very rare and potentially life-threatening disease and is often misdiagnosed for years. At the time Chacon was diagnosed, there was only one medication available which was not FDA approved for pediatric use. Over the last eight years, additional medications have been developed and approved. Chacon’s treatment currently includes IV infusions three times a week.
This spring, Chacon was out in Cincinnati to participate in the opening day parade for the Cincinnati Reds, helping to raise awareness for HAE. In May, he traveled to Vienna, Austria for a global conference. This summer, he will be visiting Capitol Hill again to meet and speak with government representatives.
Chacon is an honor roll student at St. James in Springfield and a soccer player in Union. He was a star point guard for the St. James basketball team and was selected to the Union County CYO All Star Basketball Team.
Chacon is very involved in the upcoming Second Annual HAE-in-Motion 5K in Cranford, scheduled for Saturday, September 22. Last year, the event raised over $1,400. To register for the event or to donate, click HERE.
“Even a $5 donation helps,” said Jack’s mother Lisa Chacon-Fiermonte.