In each issue of HemAware, we “Take 5” with people in the bleeding disorders community and spotlight their accomplishments with just five questions. This month, HemAware met Rachel Miller, 22, of Henderson, Nevada, who has type 1 von Willebrand disease. Rachel was recently elected to the National Hemophilia Foundation’s (NHF’s) board representing its National Youth Leadership Institute (NYLI).
How did you get involved with NYLI?
I’d been involved with camp in Northern California since 2001. In 2004, my social worker mentioned she had an application for this program and I should apply. I did, and I got in! My first NYLI meeting was in 2004 in Dallas, and I had an amazing time. Ever since then, I’ve been really involved in the leadership of the group.
What projects or youth programs are you involved in through NYLI?
In February 2008, we had our first-ever youth leadership retreat for teens ages 13–17 who either are from underserved areas or could benefit from leadership training. The idea is to introduce them to the concept of leadership so when they are old enough to join NYLI, they might take that step.
What do you think has been the greatest accomplishment of NYLI’s education programs/youth programs?
Personally, I think having a member on the board of directors is the biggest accomplishment we’ve had. When I first joined NYLI, we were kind of like an overblown teen group—we took field trips, did service projects—it wasn’t really anything that people took seriously. As the group evolved and we figured out what we wanted to do, we decided that we wanted NYLI to be a place where leaders could go and really develop their skills and learn how to lead the community into the future.
What was your reaction to hearing you’d been elected to NHF’s board? What do you think you and your experiences add to the board?
I was absolutely thrilled when I found out I had been elected. It means a lot to me because these are all people I really respect.
I bring a lot of practical skills to the table. I majored in political communication in college, and I’m really interested in organizational communication. I pride myself on strong communication skills. I think it’s really important to be able to listen to the community, realize what their needs are and what they’re thinking, and then be able to convey that to the board.
What advice would you give to kids who are dealing with a bleeding disorder similar to yours?
The thing that has helped me the most is to get involved in the community. Take a step forward and put yourself out there a little bit. The first time I met someone else with a bleeding disorder, I was 15. I was a junior counselor at camp and I was terrified. I had never met anyone with hemophilia before, or with von Willebrand disease, and it really opened my eyes. It introduced me to people who have changed my life. I’ve come so far within the organization, but I never would have done it if I hadn’t taken that first step.