I was diagnosed with NF the day that I was born. Arriving with 6 tumors coming out of your mouth, multiple cafe au lait macules, hypo-pigmented spots, and two diagnosed family members makes it pretty easy.

I have been saying “Neurofibromatosis” and explaining what it is to people who would ask about my CAL macules for as long as I can remember. Have you ever heard a 4 year old say “Manifestation”? Also, if a preschooler can say neurofibromatosis, so can your primary care physician and your great Aunt Ruth.

Whether it is NF or something else, I think that we are all lonely wolves in some way or another and even though I have always known about NF I did not connect with NF groups or real dedicated NF care until October of 2024 at a Shine A Light Walk in Cincinnati, Ohio.

I am so grateful to Joe K. and for the NF Walk for kicking off such an amazing adventure. I have found my people, my neighborhood, and my mission.

My journey has really been about  finding beauty in the weeds and the wayside, the beauty of our NF Neighborhood and the power of advocacy.

I am a word nerd and one of the fun things about the word advocate it is both a verb and a noun

AdvoCATE –  support, to defend, or advoCATe –  intercessor. 

The dualism does not stop there – we must advocate for ourselves and we get to do it for others too! 

In an ideal world we learn how to advocate for ourselves by watching the grownups in our lives who demonstrate and give us the tools to speak up.

I had the opportunity to be an eye witness to how important this is over the past several weeks – watching my husband as he manages the care for his mother who was in very critical condition in the ICU following complications from a major surgical procedure, I am confident that she would not be alive today and beginning to recover had he not been her voice when she could not speak for herself. The tender love and the fierce way that he has fought for her is incredible.

We are probably all aware that when you live with a challenging condition like NF you get used to feeling vulnerable, in a waiting room both literally and figuratively. Powerless.

And that is where  advocacy comes in. When we step out of the role of patient and into the role of advocate, we become strong no matter what our bodies think. We pick up the pen and help write the story. We learn that we can do hard things, but we cannot do them alone.

What I think you will find begins to happen is that you actually become more resilient….the pain does not become less, the unknowns do not always become more clear….but your scope of vision widens and you start to see more, you start to some glimmers. Beautiful encounters and people that only would have happened because you walk with NF. 

NF takes so much, but if you look closely enough at the weed you will start to see some flowers growing. 

Our voices as patients or care partners are not only meaningful, but they are necessary for progress to happen.

Recognize how valuable that makes you – how you can make a difference for your own care and for others… 

Advocacy is not just about sharing, but it’s about listening too. 

My favorite word is Sonder (I know you have heard this before!), the realization that everyone you meet has a story as tangled and complex  as your own but you only get to glimpse a tiny thread of it.

Sonder is what takes advocacy to the next level- where you not only fight for yourself and people whose stories you happen to be a part of, but also for strangers and the friends you have not yet met. 

The NF Neighborhood is pretty special and there are some amazing role models to walk with.

When our neighborhood unites our voices become louder and stakeholders listen! 

Now you may be asking “How can I advocate? How can I be an advocate?”

There are big ways and small ways to activate your advocacy, but they are ALL important. 

The good news is you are already an advocate just by learning about it.

The next big thing is being really honest with yourself, your own experience, and your own physical, mental, and emotional states

I am convinced that our society has forgotten how to grieve and to lament. NF is tough. Name it, grieve it.

Arm yourself with up to date knowledge from trusted resources like those shared here today. 

It is important to ask questions and then record the answers and remember that you are the most important part of your care team – so expect respect, and give it to your care team, because while you ARE the most important team member – you need the medical experts to help you….

If you find it hard to speak up for yourself, then practice…if you are a people pleaser like me, I know that this hard…you can practice in slightly less intimidating ways such as saying no to giving your email address at retail stores or kindly speaking up when your haircut is not what you asked for… you are allowed to take up space! 

For me, in a medical setting it was asking if I could skip being weighed at appointments where it was not necessary for my care. 

Don’t forget to teach your kids to use their voices too. We want them to be able to transition to owning their healthcare management and the time to start is yesterday not when they are 18.

We also really need to understand what our priorities are. For me it is cognitive health and reducing pain. But I personally prioritize the former…your healthcare providers should also know your priorities. Repeat as necessary. 

Expanding this to the community…

Look for ways to share your story. Know how to tell it, have a pithy and winsome version and one with more depth. 

Listen to other people share their stories – and not just NF experiences…. There are countless other amazing, hard, and beautiful things to learn from other people.

Knowing these threads will not only give you courage but it will also give you empathy and more patience 

Join the NF Registry

Connect with an advocacy group, you can find several on the Friends tab. 

Find a support group or make your own support team: I have several text groups with ridiculous names and the friendships that I’ve formed are some of my most meaningful (Hello “Razzle Dazzle Dinos”, “NF Superstars”, and “The Holograms”!)

There are opportunities for more formal  mentor/mentee relationships – these are meaningful connections that will make a difference in your life and in the lives of those you connect with.

Some of my favorite experiences have been helping to add to research by answering surveys, participating in natural history studies, observational trials, talking to drug makers, and even donating tumor tissue from a surgery to a biobank! 

You can reach out to lawmakers by letter, phone call, or even joining a team on Capitol Hill to speak with your representative and encourage federal support for NF research – your voice really makes a difference, and they do listen, especially when our faces and stories become familiar. 

You can join or organize a fundraiser or you can volunteer on a patient representative group like CTF Engage.

I think it’s especially vital that adults living with a diagnosis get involved, our NF parents are incredible and we need patients at the table too! 

There are big ways and small ways to activate your advocacy, but they are ALL important. 

When we are able to know our worth, properly grieve and lament the hard things, share our stories and experience the sonder necessary to really learn the stories of others our  pain or our  “Hard”  might not actually change, but our scope of vision does. Our world gets bigger and we become more resilient – resilience is strength – strength for our journey and to walk with others on their journeys. 

We transform and change the future landscape of what it will mean when someone first hears the word Neurofibromatosis.