The National Bleeding Disorders Foundation (N
To paraphrase author Oscar Wilde, imitation may be a sincere expression of admiration, but few behaviors demonstrate real belief in something as effectively as persuading others to try it out.
Since its creation in 2002, the NBDF’s National Youth Leadership Institute has assisted young people from the inheritable blood and bleeding disorders community to become well-trained, recognized leaders. Chelsee Nabritt, a 2016 program cohort member who currently works in Georgia state government, says the program changed her life. She now recruits future participants she thinks would additionally benefit.
“I tell everyone to join, especially if I know they’re in college trying to start their careers, and just need some guidance, Nabritt says. “The institute truly helps with professional development.”
Other participants, some of
“It’s like a big family when you join,” says Gabi Flores, a member of the program’s 2023 cohort. “Outside of it being a great professional opportunity, these are my best friends.”
The NYLI works to channel the energy of young people who are active in the inheritable blood and bleeding disorders community into support and advocacy.
Identified by the year participants begin the program, cohorts typically have nine members, who include college students, graduates who have already started their careers, and people who have gone from high school directly into the workforce.
When applying for the program, prospective members must submit a resume outlining their accomplishments.
Keeping Youth Advocates Engaged
“We’re really looking for people who have been involved with the inheritable blood and bleeding disorders community, volunteers who have a leadership spirit, because we want to take leaders and grow them,” explains Heather Hicks, NBDF’s manager of education. “We’re not trying to make leaders out of people who haven’t shown any leadership skills; we’re looking for those skills when we are determining who’s going to be in the program.”
In the past, many children and teens went to “various camps and attended chapter meetings with their moms and dads,” adds Brendan Hayes, the foundation’s senior director of education, innovative therapies. “But once they turned 18 and went to school or started to live their own lives, we lost them. Having a program that helps them develop professional skills is something we knew we needed.”
For Troy Longman, who is now an attorney in Florida, NYLI delivered professional and personal returns.
“I had the privilege to travel across the country and deliver presentations to numerous organizations within the inheritable blood and bleeding disorders community,” he recalls. “This hands-on experience has honed my communication skills and expanded my professional network.”
Longman, a member of the 2020 cohort, also developed meaningful personal relationships that “enabled me to stay actively engaged at both the local and national levels,” he says.
Like its alumni, the leadership institute has changed as it has grown, shrinking from a three-year program to two years and tightening its development tracks to focus on three core subjects: research, advocacy, and education.
Each year of the program focuses on developing specific skills through in-person training, webinars, and year-round communication. Participants improve their communication, self-management, career skills, speaking and facilitation capabilities, emotional intelligence, and knowledge of inheritable blood and bleeding disorders.
While the institute uses webinars and virtual meetings, participants also meet in person for events, including onboarding and the NBDF’s annual Bleeding Disorders Conference.
“We’ve found that so many people have knowledge of their own bleeding disorder but don’t know anything about other bleeding disorders,” Hicks says. “We really encourage them at the Bleeding Disorders Conference to attend not only sessions for their specific disorders but also sessions where they can learn about somebody else’s experience.”
Hearing how other people have coped with, and grown from, their inheritable blood and bleeding disorders proved energizing for Marissa Johns, a University of Louisville student and member of the 2023 cohort.
“I had previously met very few others with a bleeding disorder, let alone someone my age,” she explains. “I was able to have many conversations in which I not only learned about others’ experiences but finally felt like I could relate my experiences with health care, a bleeding disorder, and being a college student with those around me.”
Education, Advocacy, and Research
In the first year of the program, participants tackle public speaking, leadership techniques, networking skills, and resume building while deciding on the specialty track that will shape their work during the rest of the program.
- The education track includes training in planning programs for educational events, learning about the foundation’s educational outreach programs, and finding out how the education department supports people with inheritable blood and bleeding disorders.
- In the advocacy track, participants get training and experience in speaking with lawmakers, facilitating training workshops, and teaching adolescents and young adults to become more confident spokespeople for the inheritable blood and bleeding disorders community.
- The research track provides training in understanding and conducting research that affects people with inheritable blood and bleeding disorders. Participants attend meetings and programs to develop outreach materials for local NBDF chapters and gain experience in communicating scientific information to others.
The second year of the institute is devoted largely to a capstone project, a newer piece of the program. Participants use what they’ve learned to plan and carry out an initiative that benefits the inheritable blood and bleeding disorders community, collaborating with foundation employees who have expertise in the area.
Successful projects go beyond developing a presentation to include more concrete and interactive components such as activities, discussions, and even flyers or posters, Hicks explains.
Cohort members seem “to enjoy the experience and feel like they’re making a difference,” Hicks says. “I think they also like getting to work so closely with somebody who actually has a career doing something they’re interested in.”
Participants on the education track, for instance, attend many of the planning meetings for the national Bleeding Disorders Conference, where they learn what’s required to organize a three-day event that attracts thousands of people. They also critique storyboards and scripts for educational videos made by the foundation’s education department.
“They really get to see a lot of things that most people don’t get to see unless they’re doing an actual internship,” Hicks says.
‘Best of Both Worlds’
Nabritt, who was selected for the institute’s advocacy track while working as an administrative assistant for the Georgia General Assembly, says she especially enjoyed opportunities to meet with lawmakers in Washington, D.C.
She also coached young adults in presenting their own stories to elected officials while seeking support for legislation that would benefit people with inheritable blood and bleeding disorders.
Many of them were nervous about talking with people in high-profile roles, and Nabritt used her own experiences to reassure them
“I would tell them, ‘Look, I was nervous, too, but after my first year, I realized these are regular human beings who have to put on clothes just like me, take a shower just like me, and have regular lives just like me,’” she says. “I reminded them, ‘No one else knows your story. You deal with your bleeding disorder every single day. Tell them. They would love to know.’”
Ultimately, participating in the institute was the “best of both worlds,” Nabritt says. “I love working with the youth, and politics, and law, so I was able to merge those worlds into one.”