Five Things to Love About Being Part of NYLI (And One You May Not)

Author: Brent Movitz

One: Making Amazing Friends.

Once you become a member of the National Hemophilia Foundation’s National Youth Leadership Institute (NYLI), you are introduced to 20 or so amazing new friends who share the unique bond of being in the bleeding disorders community. NYLI may be a diverse group filled with edgy vegetarians, die-hard adventurers, preppy intellectuals, glittery characters and extroverts from all over America. In the end, you share a connection and a mission to gain leadership skills and reach out to the community, as well as countless laughs, debates, meals and some pretty hilarious inside jokes.

Two: Seeing the World

One privilege of being in NYLI is that you’ll travel all over the country. NYLI leads youth retreats in Texas, participates in yearly advocacy initiatives in Washington, DC, visits rural campsites for Team Hemophilia in the summer, and explores a new city each year at NHF’s Annual Meeting. What’s more, you get to visit all these new places with people who will become some of the best friends you will ever meet.

Three: Learning Leadership and Self-Development Skills

One of the best parts of NYLI is that you learn and grow as a person. You will be working with people with different perspectives and backgrounds toward a common goal. You also learn leadership and communication skills in order to work within the group, lead teens in activities and talk with legislators as well as NHF staff. Both intentional and unexpected growth occurs while members are under NYLI’s wing.

Four: Becoming More Involved in the Community

There are many benefits from getting involved in a community encompassing such a wide array of life experiences. You will meet people who will become your friends and confidants and who may share many similar—sometimes overwhelming—experiences from having a bleeding disorder. These connections can be incredibly rewarding when you need advice or just someone to talk to. Plus, nearly everyone with a bleeding disorder has benefited significantly from the work of NHF in areas such as education, medical treatment and social outreach. It’s a great feeling to give back to a community that has affected your life in so many ways.

Five: Making a Difference

This is undoubtedly the most important reason: Once you join NYLI, you are labeled as a young leader in the community. This is a responsibility with which one can do an incredible amount. You can make a political impact by talking to legislators in DC, or become a role model for a younger teen from a retreat or hemophilia camp. Past NYLI members are now law students, medical students, government aides, teachers and even pilots. Through NYLI, the most significant impact you can make is in the lives of the next generation of people with bleeding disorders. You are setting an example, as well as starting a conversation and giving advice from the perspective of a peer without the reproach from being seen as an authority figure.


Let’s pause to squeeze in one thing about NYLI you may not love: the time commitment. Being a part of NYLI can sometimes bring a heavy responsibility. We want dedicated individuals who are willing to make sacrifices to contribute to a wonderful cause. We have a huge amount of fun, but we are committed to our mission, and commitment means work. However, when 20 or so young adults are dedicated to a cause, amazing things can happen.

Brent Movitz, who has severe hemophilia A, is a law student at Chicago-Kent College of Law. He is from West Bloomfield, Michigan.