When we find the nexus of our own curiosities, personal needs, and the needs of our community, we find work that is not drudgery, but deeply satisfying.

We find that in our view, no longer looms only our lack, pain, or frustrations, but opportunity to help make the world better. We find we can participate in acts of beauty, like service, creativity, healing, or justice. 

This is how my advocacy journey was born.

In the middle of a very busy three weeks of medical scans and “routine” imaging – at least 10 appointments in a three week span including Multiple MRI scans, ultrasounds, and specialty healthcare appointments, I ALSO did several  NF advocacy activities (and I am only halfway through..)

One day, I am sliding into a banging tube of strong magnets, wearing only a thin and ill-fitting gown that I had just clutched to my body as I shuffled to get an IV for the contrast that would course through my body to reach untold numbers of tumors camping out on my nerves, the next day I am dressed to impress, walking the halls of Congress and Senate, sitting in offices to explain Department of Defense funded programs and why Congress and Senate should approve this funding again this year. 

It is surreal.

It is a serious privilege to be able to speak for my NF Neighbors, to carry their stories with me, to fight for them – and for myself and to have a small role in making the world a more hospitable place. 

NF is harder than I can even put into words, and I know my NF neighbors will understand when I say that NF never seems satisfied with its work, these scrappy misspelled Chromosomes never seem tired of their nonsense. 

While I bounced back and forth between “patient” and “advocate”, becoming more agile at shifting  between the two roles and learning that they are really not divorced from each other. My voice shakes less when I must speak up for myself as a patient and I can show more vulnerability when I sit in rooms to represent and fight for forward movement and support for others. 

In addition to Capitol Hill and the gauntlet of medical appointments, I was also honored to have a literal seat at the table as a panelist for Cleveland Clinic’s “Neurofibromatosis and Schwannomatosis: Hope, Health, and Progress” 2026 Patient and Family Symposium. That they had me “stand in the place of hope” was very meaningful to me and I was thrilled to have a chance to be an encourager, to cast hope upon the waters believing that it would allow others to feel less alone or less afraid.

We can find satisfaction in good work and when we discover our purpose; we find we are glad to exist, even with hard circumstances, and that there is room for joy even next to sorrow and the when the two hold hands we are more powerful.

Curiosity killed the cat, but satisfaction brought him back.

If you have questions about NF advocacy or any of my other activities, drop a comment below!