UNION, NJ – Twelve-year old Jack Chacon is at it again. An advocate for the Hereditary Angioedema Association (HAEA), Chacon will be hosting a 5K event in Cranford at Nomahegan Park on Sept. 23.
Chacon was diagnosed with HAE when he was four-years old and has become an advocate in fundraising and awareness for the disease. Chacon was appointed to the HAEA Youth Leadership Council and recently spent a day on Capitol Hill meeting and speaking with health care aides for senators and representatives from New Jersey, New York, Pennsylvania and Massachusetts.
Hereditary angioedema is a rare disease of the immune system that causes spontaneous swelling throughout the body. It’s so rare that it only affects an estimated 1 in 10,000 to 1 in 50,000 people around the world. The “angioedema” in HAE refers to a swelling of the skin, including the hands, feet, face and airway.
“The medicine costs a lot of money,” said Chacon. “Some of the money we raise can help others who can’t afford the medicine and some of the money can be used for research.”
Chacon spent a week in August in Germany at an International Youth Camp for HAE patients and was invited to Vienna for an international conference next Spring. Later in September he will be speaking at the HAE Patient Summit in Minnesota.
Chacon served on a children’s panel at the 2015 U.S. HAEA National Patient Summit in Denver, where he spoke in front of 500 people about his plan to continue his advocacy for HAE.
“I want to help raise awareness of HAE so that people can get diagnosed quicker and then get the help they need,” said Chacon.
For more information on the Sept. 23 5k, visit: http://events.haea.org/site/TR/5K/TeamRaiserPagewrapper?pg=entry&fr_id=1280