In 2015 the HAEA launched it’s first HAE IN-MOTION event, in Denver, Colorado. Since then, these 5k run/walk events have been held each year in cities across the United States, engaging thousands of patients and community members in a growing effort to raise awareness locally and fundraise for the HAE community. On August 4, 2018, patients, caregivers, and stakeholders joined forces in Wheaton, Illinois to participate in the most successful HAE IN-MOTION event to date, collectively raising over $11,000. These events provide the community with an opportunity to meet other patients in the region, connect directly with HAEA staff, and get to know one another as they walk/run the course of the race. HAE patients have the opportunity to create teams, encouraging family, friends and community members to show their support. As you will read below, after being diagnosed only 2 years ago, Luke Granat and his family found strength and a sense of community through their participation in the HAE IN-MOTION event in their area.
Written by Luke’s mom, Mandy Granat
Hello! Team Luke and his Puffy Posse had an amazing show of support at the HAE IN-MOTION 5k in Wheaton Illinois! Our main goal was to raise awareness in our community for this rare disease, in which we succeeded! We had many friends and family join us in this great event. This 5k holds a special in my heart because it is where we got our start in the HAE community.
When Luke was diagnosed 2 years ago at the age of 9, we knew nothing about HAE or anyone else who had it. I spent most of my time navigating the internet searching for any information I could find. I joined the mailing list on the HAEA website and received an email about a 5K in my area so I thought it might be a good idea for our family to go and see what it was all about. It was at this very event that our lives changed for the better! We met many patient advocates who offered support and pointed us in the right direction, pharmaceutical reps who discussed the latest treatment options, and many patients and families who told us their stories. It was also here that we heard about the HAEA Patient Summit and were encouraged to participate.
This 5K really was the turning point in our journey – and for that we will be forever grateful. Luke has come a long way in two years and I can only hope he continues to empower himself and others who live with this rare disease. We are committed to supporting the 5K HAE IN-MOTION every year as a big THANK YOU for providing continued resources and multiple treatment options for Luke. We hope that each year is bigger and better than the year before as we continue to spread awareness!!