Spotlight on NYLI

Revamped program for young adults fine-tunes its focus
Author: Leslie Quander Wooldridge

Carson Ouellette, 23, applied to the National Hemophilia Foundation’s (NHF’s) National Youth Leadership Institute (NYLI) when he was a college sophomore. Now in his third program year, the college graduate from Moorhead, Minnesota, credits NYLI with improving his communications skills. NYLI helped get him where he is today, serving as president of the Bleeding Disorders Alliance of North Dakota. “It definitely helped me professionally,” he says.

Ouellette’s experience is no surprise to Grant Hiura, NHF education coordinator. NYLI offers young people with bleeding disorders leadership opportunities to effect change and positively influence others. The three-year program for 18- to 24-year-olds, currently has 21 participants. NHF recently added specific learning tracks—outreach, advocacy and nonprofit development.

This transition was timed to coordinate with NHF’s larger goal of delivering more in-person programming. “The program has always had a social aspect. Now there’s a higher expectation for assignments and networking,” explains Hiura.

Today, NYLI focuses on developing participants’ abilities through in-person trainings, webinars and other communications. First, the young adults work on skills such as public speaking, leadership techniques, communication and résumé building. In their second year, participants select an area of focus.

Travel takes NYLI members to cities throughout the US. “In 2015, participants traveled to New York; Washington, DC; Phoenix; and to NHF’s 67th Annual Meeting in Dallas for learning opportunities,” Hiura says.

All About Outreach

Those in the outreach track learn to facilitate and deliver educational programming directly to NHF chapters and hemophilia treatment centers. Programming includes Steps for Living­ workshops such as “Do You Bleed Like Me?” which offers information about various bleeding disorders.

Marlee Whetten is in her second program year. She was drawn by NYLI’s service focus and wanted to meet others with bleeding disorders. “Since I’m in the outreach track, I get to do a lot of programming with different chapters,” says the 22-year-old from Provo, Utah. “Talking about the different bleeding disorders is important,” she explains. “We’re unifying the community.”

A Primer on Advocacy

The advocacy track, formerly called the Future Leaders program, teaches young people how to speak with elected officials and become better activists. NYLI members then help run advocacy and legislative events for chapters.

“We go through a variety of trainings, then apply what we’ve learned at a local and national level,” says Nikole Scappe, 24, a college junior from Coraopolis, Pennsylvania, in her second year of the program. She is also an advocacy intern. NYLI has given her a foundation for training others. “With NYLI’s advocacy track, our goal is to manage an actual advocacy campaign for a chapter,” she says.

Focusing on Nonprofit Development

The nonprofit development track shows the young adults how to run nonprofits by letting them serve local chapters in a leadership role. Some sit on chapter boards; others develop a fundraising or awareness campaign.

As a board president, Ouellette plans board meetings and completes required paperwork. He also works for US Sen. Al Franken (D-MN). He speaks with constituents and takes their concerns back to the senator’s offices. The nonprofit development track, and its training on everything from fundraising to management, has helped with both responsibilities.

There are many benefits to joining NYLI. “You get to travel and have experiences that others don’t have,” Ouellette says. “You make friends and you also make connections.”

NYLI is supported by Bayer HealthCare, Baxalta, Novo Nordisk, and the Charles and Mildred Schnurmacher Foundation, Inc.