In each issue of HemAware, we “Take 5” with people in the bleeding disorders community and spotlight their efforts with just five questions. This month, HemAware met Alex Ell, a 20-year-old member of the National Hemophilia Foundation’s National Youth Leadership Institute (NYLI), who participated in Team Hemophilia on Tour. The Team Hemophilia on Tour bus took its message of bleeding disorders awareness on the road across America during the summer of 2008. Participants met with chapters to lead youth programming activities and got involved in race day bleeding disorder awareness events.
What did you enjoy most about Team Hemophilia on Tour?
I really enjoyed visiting the chapters. Each chapter we went to had a great turnout. We would see kids and their families, and they all talked to us; they were all very supportive of what we were doing. It felt like we had a positive impact on the communities we visited. It was also really nice to see the country. I especially enjoyed Camp Independence, the Oklahoma summer camp.
What was so special about your experience at Camp Independence?
When we arrived during lunchtime, the entire camp was there. The camp directors just handed us a couple of hours of their schedule with all the campers. We did our program for about 50 kids, and all the counselors helped. I think we were able to do some pretty good leadership training. It felt like we made a difference.
How did you prepare to work with the kids?
Before the other Team Hemophilia on Tour participants and I met, we talked to each other over the phone and through e-mails and designed the programming. We wanted to focus on team building, because that’s what a lot of the chapters want to focus on with their kids. Trust was another theme. So we planned to have the kids break up into groups and work on those themes.
Why do you feel programs like Team Hemophilia on Tour are important?
I’ve done these types of exercises over the past few years and they have made me a better leader. It feels like we’re passing on the torch to the younger kids so they’ll be doing what I’m doing in a few years, when they’re old enough. We’re trying to give the younger kids the skills to become good leaders. It’s why we do it, to give back to the community and keep everything moving forward.
NHF will be sponsoring the tour again next year. If your friends were to go on the tour, what advice would you give them?
I would tell them to prepare before they get there. It really helps to have an agenda designed in advance, even if it’s just a rough sketch. We all brought materials for what we were doing, so I would say: Set an agenda, bring the materials and then work with the people at each site. Also, know the setting—it really makes a difference. There are big differences if you’re going to be in a conference room, for example, rather than outside in a field.