One has launched the first-ever camp in Mexico for children with bleeding disorders. Another dreams of such a camp in China. Still another is writing children’s books that challenge kids with bleeding disorders to live full and active lives. All are dedicated to using their leadership skills to serve young people at camps and National Hemophilia Foundation (NHF) chapters nationwide. In turn, they say, their experiences have inspired them to give back to the community at large through their careers and volunteer service.
These outstanding individuals are among the 50 participants in NHF’s National Youth Leadership Institute (NYLI), which selects young adults aged 18 to 25 to spend three years helping NHF chapters and local associations build strong youth programs. Each chapter and association is invited to nominate up to two young people who have demonstrated leadership in their hemophilia camps, chapters or in their school or home communities. Eligible nominees include siblings, children or close friends of people with bleeding disorders, as well as those who have such conditions themselves.
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Those selected for the program attend NHF’s Annual Meeting, where they are introduced to the broader bleeding disorders community and receive training to hone their skills in leadership, team building and problem solving. Each new leader works with a mentor-usually a more seasoned NYLI member to plan and implement local education projects.
For many, the experience leads to service at the national level and to jobs in healthcare. “We have an NYLI member on almost every NHF task force, and one member also has a seat on our board,” says Jennifer Crawford, NHF education manager and staff liaison for NYLI. There now will be ongoing representation; in June 2007, the NHF Board approved NYLI’s request to have a seat on the board. “Some members are applying to medical school,” says Crawford. “One young woman got really fired up by our Washington Days program and now has a job with the nation’s largest healthcare union, lobbying to put healthcare at the forefront of presidential candidates’ agendas.”
The following personal stories of three NYLI members highlight the enthusiasm and creativity in the group.
Cecilio Velasco—A Dream Realized
Cecilio Velasco, who has moderate hemophilia B, grew up in Mexico, where he says hemophilia services are severely limited and camps for children with bleeding disorders are nonexistent. Because he has relatives in Texas and California, he has been involved with camps in those states since he was 11 years old, first as a camper, then as a counselor-in-training and, finally, as an assistant counselor.
Now a 20-year-old sophomore at Georgetown University in Washington, D.C., and an NYLI member for just over a year, Velasco has realized his dream of founding a bleeding disorders camp in his native country. “It was something I had in mind three years ago, but when you’re 16, it’s hard to get people to take you seriously,” he says. Last year he met someone who did take him seriously—an official of the Global Health Society, Inc., an international healthcare organization, who provided funds and some personnel for the camp project.
In Mexico, Velasco enlisted the aid of Tabasqueña de Hemofilia, a nonprofit organization in the state of Tabasco that operates a hemophilia treatment center (HTC) with a full range of facilities, including a dining hall, swimming pool, and arts and crafts room. The organization agreed to host a camp at its compound and helped recruit campers, counselors and support staff. In summer 2007, 38 campers from several Mexican states attended a five-day session, sleeping on donated mattresses and sleeping bags in an unfinished auditorium. In addition to fun on-site activities and field trips to parks and museums, the campers—and many of the counselors—learned for the first time about their bleeding disorders, how to care for themselves and how to self-infuse. “Most of the campers didn’t know what kind of bleeding disorder they had, and more than 75% of the counselors didn’t know how to self-infuse,” Velasco says.
Having achieved his dream, Velasco is determined to make the camp a yearly event. As a finance and accounting major, he wants to work for a large international bank when he graduates and pledges to always be part of the hemophilia community, perhaps using his expertise to raise funds for hemophilia groups in Mexico or advise them about financial management. “NYLI has changed my perspective,” he says. “Before, it was all about being successful, but through this group, I’ve realized it’s not about how far you get, but what you do along the way.”
Leslie Situ—a dream discovered
Leslie Situ discovered she was a hemophilia carrier at age 9 when her family moved from China to California. She was tested after her father, then in his mid-30s, was diagnosed definitively for the first time with severe hemophilia. As a teen, Situ began attending hemophilia camp and became a junior counselor. Now 20, she is a student at the University of California, Berkeley, pursuing a double major in premed and business.
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A three-year veteran of NYLI, Situ has developed an education program on decision making for young teen and preteen campers. She has obtained funding through her local chapter for a program that will educate Bay Area kids about how to speak up for themselves, how to transition from high school to college and how to prepare for leadership roles in the camp and the chapter. Her goal for the current school year is to raise awareness of von Willebrand disease among young women on campus and among staff at the university health center. Her ultimate dream is to start a camp for children with bleeding disorders in China, where she says some get no treatment at all. “Many people there can’t afford factor or don’t even know it exists,” she notes.
Situ’s leadership roles with the hemophilia camp and chapter have led to greater involvement in the community at large. “Because of my experience at camp, I got my first job tutoring kids at a library in Oakland, California,” she reports. “I’m now on a committee for Oakland Fund for Children and Youth, which awards 2.5% of the city’s unrestricted funds to youth programs.”
Her experience with the bleeding disorders community and NYLI has influenced her career choices as well. “I want to be a hematologist,” she declares, citing her dad as part of her inspiration. “It’s amazing he survived all those years without receiving any treatment at all. I feel like a lot of people here get inadequate treatment, too, or don’t take advantage of what’s available. I want to promote more care for them, which is where my interest in business and marketing comes in.”
Brittany Zellner—A dream reborn
Born into a Wisconsin family with bleeding disorders, Brittany Zellner has moderate type IIa von Willebrand disease. In addition, she has had the unique experience of growing up with a twin brother who did not inherit the disorder. Now 21 and a junior at the University of Wisconsin-Parkside, she has attended camp in neighboring Michigan since she was 10 and has been active with both the Hemophilia Foundation of Michigan and Wisconsin’s Great Lakes Hemophilia Foundation.
Employed year-round as a lifeguard, Zellner also serves as waterfront director of Camp Bold Eagle in Holton, Michigan, and is in charge of swim lessons, beach trips and other water-related activities. She has developed a water-safety education program for campers.
Now in her third year with NYLI, Zellner has embarked on a new project—writing a series of children’s books inspired by her own experiences. She is planning four books, covering life stages from infancy to the beginning of college. “The books focus on how someone with a bleeding disorder can do the same thing as a brother or sister or friend without a bleeding disorder—they just have to do it in a different way,” she explains. “The message is that kids with bleeding disorders should not be excluded, but should be able to do anything they feel comfortable doing.” Zellner hopes to publish her books and distribute them through the HTC at Children’s Hospital of Wisconsin in Milwaukee, where she has received treatment all her life.
In the broader community, she supports organizations working to fight other blood-related disorders, such as hepatitis, which relatives have lived with for several years. But unlike some of her peers in NYLI, she has not chosen a medical career. A criminal justice major, she plans to become a lawyer and specialize in malpractice law and/or child advocacy.
“There’s no doubt that I’ll always be part of the hemophilia community,” Zellner says. “If I didn’t have a bleeding disorder, I wouldn’t have gone to Children’s Hospital and never would have found out about camp, which means I never would have met many of my best friends or become part of the task force or worked on this book. So, my bleeding disorder actually has affected my life for the better.”
As Velasco points out, there are numerous stories of innovative projects and creative thinking within NYLI. “These youth leaders have done so much you absolutely can’t believe it,” he says. “When you put us all together, it’s wonderful the ideas that people come up with.”
“Sometimes age is not the most important thing,” he concludes. “It’s the experience and dedication and devotion that matter most.”