My NF compass: Aunt Flora
Author: Cheri Stewart
Published On: 04/03/2017
Cheri Stewart, president of the Neurofibromatosis Network, addressed the Board of Directors October 22, 2016 just before the 6th annual NF HOPE Concert. We would like to take this opportunity to pass on her inspirational comments to our readers.
I am so proud to be with you on this sensational weekend that we all look forward to — a weekend of HOPE, a weekend of celebration, a weekend of review. Together we will examine the work we’ve done, our successes, necessary transitions. Until the cure is found, we will NOT be distracted or derailed from what we need to do. We will NOT be lost. This is a weekend to strategize, to check our NF compasses and determine our direction for the work still to come, evaluate ongoing and future programs and projects. We’re navigating through this work with our eye on the mission. This is our quest, a quest to find more meaningful and improved treatments. Our NF compass guides us to continue to provide community support, education, networking and a powerful voice in DC. That’s what we do. That is exactly how we roll. Yes, we have challenges, but those challenges strengthen us, improve us, sharpen us and polish our compass, help us to navigate so that as we work, we never lose sight of our mission. We will not be lost in our NF quest! We will not be lost to the “enormity of the importance and implications of the mission” (Steven Schlussel).
Our personal drivers are our kids, our family and friends who are struggling or have struggled living with the complications of neurofibromatosis in their lives every single day. It’s the Leahs, the Jennys, the Aarons, the Emmas, the Elanas, and for me, Aunt Flora — their superhero powers of strength and courage, the life lessons they teach us, their amazing spirits — that keep us from relenting when the going gets tough. Our respective dedication to these individuals will keep us on task; it is our real driving force. But this weekend we are privileged to be part of an incredible larger community of people, be part of something special and bigger than who we are. I’d like to thank you all for that. We need each other. We work together as one, despite our differences; our success as a whole depends on each of us as individuals. This unity, our collective commitment and passion for our quest will lead to more treatments for NF and — one day — a cure.
Sadly, one of the most dedicated advocates for our community, Steven Schlussel, passed away June 16, 2016. Steven was a soul on fire; he, along with Robert Wilson, was the father of the advocacy program — literally created the program, worked our way to the Hill, brought Ed Long along for the journey. Those first few voices in DC started as whispers, with nine signatures of support, nine people who signified a path to spreading knowledge of this little-known condition.
Steven, of course, shared his fire and his knowledge with Karen Peluso, Mary Ann Wilson, and Kim Bischoff. And where did that lead? Those nine initial signatures multiplied quickly to 133! Together we’ve raised $300 million through advocacy work. The House Appropriations Committee released a report accompanying their Fiscal year 2017 Labor Bill using NF language! This signifies epic change, epic results, starting from a seed — Steven and Robert — and a whisper.
More recently, when one rep decided NF funding should be shut down, everyone collaborated and collectively said, “Oh NO you don’t!” and…for now, saved the program. From a whisper, to a ROAR!
Perhaps most inspirational to me, and something I would like to share with you today, are Steven’s own words of regret regarding passing out of this life: “Advocating for NF has been the single greatest experience of my life. I’m sorry to leave the crusade, but my heart never will.”
It seems obvious that — with our brave kids serving as inspiration, with the support of our NF communities, and with the passion of people like Steven — we will see more improved treatments, more individuals touched by our group. Our mission is clear: until the cure is found, as we transition forward together, we will NOT be lost!
Cheri Stewart has volunteered for NF communities for the past 20 years. She has served as NF support coordinator in Washington state, as local president for WSNF, and currently serves as president of the NF Network. Cheri attended college at Black Hills State and currently works with the U.S. Social Security Administration as a disability claims specialist.