NYLI What In The World Is IT??!!
In 2004, the National Hemophilia Foundation launched the National Youth Leadership Institute (NYLI) at NHFs 56th Annual Meeting in Dallas, Texas. The Institute was created to foster the development of leaders and to help NHF Chapters across the country build strong youth programs. The Institute has specialized programs for youth at each stage: kids, teens and young adults.
NYLI Mission
Youth Leaders are composed of dedicated, ambitious leaders [many affected by bleeding disorders] who work to create continuity in local bleeding disorder communities. Youth Leaders help foster a sense of unity through the sharing of common experiences and establishing the foundation for future generations. Our awareness, knowledge and advocacy empower Youth Leaders to pass on the torch of passion for future leaders [in the bleeding disorders’ community].
NYLI Was Created To...
• Provide young adults with leadership and problem-solving skills;
• Create the next generation of leaders both locally and nationally;
• Help Chapters start or enhance local youth programs;
• Identify and reach increasing numbers of underserved youth;
• Provide a mechanism to educate youth about major problem areas and good health practices.
NYLI Is Composed Of...
Young adults, ages 18-25, who have demonstrated leadership skills in their community. After participating in NYLI training, Youth Leaders are responsible for implementing youth events focused on prevention/self empowerment in their local areas. Mentors from local chapters provide guidance and support.
 Julia McDougal, 17
Chapter: Utah Hemophilia Foundation
Hometown: Orem, Utah
Hobbies: Playing the harp, cello, and piano, singing and dancing
At age 13, I was diagnosed with von Willebrand disease (vWD). I decided then that I could take my illness and use the experience to spread awareness and to help others living with bleeding disorders. I served as a camp counselor for the Utah Hemophilia Foundation’s summer camp, Camp Valor. I have lectured at Brigham Young University’s Health Science Classes on vWD. I served on the Primary Children’s Consumer Advisory Board, and currently serve on the Board of Directors for the Utah Hemophilia Foundation. I was also featured on a local Channel 2 News, “2 Inspire” program focusing on my active life with vWD.
 Rich Pezzillo Jr., 23
Chapter: The New England Hemophilia Association
Hometown: North Providence, RI
Hobbies: Hiking, swimming and weather forecasting
I joined NYLI because I love to hear stories and meet people from around the country living with a bleeding disorder. Their courage, perseverance and will give me motivation and a continued positive attitude. We have so many things in common because they understand what it is like to live with a bleeding disorder--it’s an instant connection and friendship. The opportunities and experiences are limitless.
 Harvey Gates, 18
Chapter: Hemophilia Foundation of Maryland
Hometown: Bowie, MD
Hobbies: Playing tennis, basketball and chess; listening to music; going to the movies; hanging out with friends; watching NBA and NFL sports
I have been active in the hemophilia community for several years and have benefited from several NHF-sponsored programs. I have always had leaders help me and now I want to be a leader to other youth and tell them my story. Youth need role models they can relate to and who can show them the way. I feel that now that I am older, it is time for me to give back and share my experiences, giving of my time and attention to help others. I am excited about NYLI because it will provide me with a great opportunity to be of great service to the bleeding disorders community, particularly the youth.
I have served as the Youth Coordinator for my local chapter, Hemophilia Foundation of Maryland (HFM) for several years. In this role, I help plan and execute various activities for children and teens for the chapter events. Nationally, I was selected as the teen delegate to represent HFM at the Hemophilia Federation of America’s annual educational symposium. I have participated in NHF’s Youth and Adolescent program yearly since I was seven years old. I have also attended hemophilia camps every summer since I was seven years old.
Currently, no one from the Delaware Valley Chapter is part of NYLI, but we would like to change that!! If you live in the DVC area and would like more information about NYLI or would like to apply to become a part of this great group of young people, contact the Chapter office (215-885-6500). The NYLI does make a difference and SO CAN YOU!!! Our future depends on it!!
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