Celebrating 35 Years

Young Adult Leadership Program

Because the neurofibromatosis cause needs New Fighters and young iNFluencers!

See photos

This January I had the extreme privilege of participating in a pilot NF Young Adult Leadership (NFYA) program created in collaboration with NF Midwest, Texas NF, and the Littlest Tumor Foundation . We’ve been working for about a year to create this pilot program to develop NF leaders of tomorrow who can advocate for research, raise awareness, educate the public, and support and represent the NF community.

The initial program ran over four days in Washington, DC.

On day one Jennifer Caleshu, a facilitator and executive coach for the Berkeley Executive Coaching Institute, worked with the young adults on developing their leadership and communication skills. This included learning how to tell a story; what makes a good leader; speaking skills; and more.  In that first day the young adults had to stand and share a partner’s story and some of us were moved to tears by their stories and their newly learned skills.

On the second day, the young leaders discussed their individual skills and how to use them based on a survey they took before attending the program.  Later they went over to the House of Representative office buildings where several members of the House or their legislative aides visited with them over the course of two hours. The Representatives and legislative aides shared tips on how to advocate, including what works and doesn’t work. The young adults educated them all about NF and shared their personal stories. This was incredibly moving!

The rest of the second day, and the entire third day, were spent going to the offices of every Representative and some Senators for scheduled meetings or drop-ins. The young adults worked with experienced mentors to hone their skills.  They invited the Representatives or their aides to attend a briefing on Friday about NF research and the collaboration between the National Institutes of Health, the NF Research Program (NFRP) through the Congressionally Directed Medical Research Program (CDMRP), and community funders. In their meetings and drop-ins they talked about neurofibromatosis, NF research, and how NF affects their lives.

NF Midwest’s sponsored young adult leaders. L to R – Emily, Sabrina, Rachel, Erik

These young adults had a powerful impact! Most of the time lobbying involves parents of children with NF and a few adults with NF.  I’ve lobbied for ten years and THIS was a lot different. The affect these young adults had on the Representives, Senators, and aides was often visible. Some of the young adults struggled a little with learning disabilities or memory issues. Some had signs of physical limitations, or visible tumors. All had real, inspirational stories of how NF has impacted them.

The people they met with were moved by them and I have no doubt they will be remembered much more than me.

Finally, on the fourth day (I say finally because we were all exhausted!) the briefing was held. This amazing briefing was put together by Tracy Wirtanen and her wonderful team at the Littlest Tumor Foundation. The briefing included Jill Morris PhD,  NF Program Director at the National Institutes of Health; Naba Bora PhD, Director of the NF Research Program through Department of Defense CDMRP; Roger Packer MD from the Children’s National Medical Center; Andrea Gross MD from the National Cancer Institute,; Annette Bakker from Children’s Tumor Foundation; and two parents of children with NF, Renee Moss and Gregg Erickson.

The young adults helped to host the program and the aides that attended remembered them. Most amazingly the room was extremely crowded and some aides said that they’ve never seen a briefing like this so well attended. It was certainly the largest crowd at a briefing for NF ever!

I guess the lesson is that when young adults speak, people listen….either that or you just can’t say “no” to them!

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