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What NF Forum Meant to Me

By April 24, 2015February 28th, 2024NF Summit

Last week, the NF community gathered in Scottsdale, AZ for a long weekend of leadership training, research updates, and patient and family support. We asked Nicole Steinert to reflect on attending her first Leadership Summit and NF Forum.

When I signed up to attend the NF Forum, I had no idea the impact it would have on me. I was asked to attend as a Council Member; I was honored for the invitation, but I was hesitant to go. It would mean leaving my family for five days. I’ve never left my kids for five hours, let alone five days!

With some creativity and a lot of help from my mom, I was able to make it happen. And man, am I glad that I did! From the start of the Forum, I felt welcome. It was such a warm, inviting environment.

We jumped into event planning and networking. We spent the day collaborating and learning about the resources available to us and what other chapters across the U.S. are doing to raise money and awareness. That evening we had a dinner where we were asked to meet and share with as many new people as possible. I spent much of the evening in tears, learning about other families going through similar things as us. I got to meet adults living with NF, and learned about their struggles and triumphs. It felt like a big family reunion, meeting distant cousins I didn’t know, finding out how much we already had in common.

The next day we learned about the research happening in the field of NF. We learned about Synodos and how they are collaborating and working together with the common goal to End NF. We learned about the Patient Registry and the BioBank, and why it is crucial to get registered. We learned about all the Clinical Trials. I was able to bend the ears of the scientists that are working to find solutions for my son. It was incredible.

We also learned about community outreach, such as becoming involved with petitioning and advocating on Capitol Hill, improving NF Clinics, and building the NF Registry. What a way to feel empowered!

As families affected by NF started trickling in, I started noticing more and more people who were visibly affected by NF. And for a moment, I’ll be honest, I was scared. I was staring into the face of my biggest fear. And then I met families who had lost children or siblings to NF. I was shaken by the harsh reality that I could one day be in their shoes. And I started realizing just how real this fight is. I was no longer doing it for my son; I was also doing it for all of the millions living with NF, for their parents struggling to help their children, for those that have passed from NF, and for those that are newly diagnosed, lost and alone like we were.

The NF Forum gave us a platform to begin conversations with Maddox. It’s tricky figuring out how to talk with a youngster about a serious condition they were born with. They want to know if others have the same issue. They don’t understand why they have spots and bumps and their siblings and parents and/or peers don’t. At the Forum, my son had the chance to meet others with NF, and we have continued the conversation. He wanted to know why they had funny bumps on their arms. I told him that those bumps were reserved for only the most courageous of souls. They hold a special title called “NF Warriors” and we are humbled in their presence. He has so many NF Warriors he can look to now. What a gift this is for me. I cannot protect him from NF, but I can make it less scary for him. These NF Warriors do just that. I am so inspired by their achievements and their positivity. They are truly amazing human beings who give so much to our NF community.

What I walk away with after five days: A strong sense of family and togetherness. Sincere gratitude for those that have gone before me and have been paving the way in the field of NF to grow CTF to what it is today.

Many of the adults I met at the Forum had not met anyone with NF until attending a Forum or a Walk. My little Maddox has it so much better than that. He has older NF Warriors as mentors. He will one day attend camp and learn from these real-world heroes. He can jump online and see other children battling similar circumstances as his. He can attend these forums and feel fully included, where people will automatically know his plight. He can attend the wonderful events hosted by CTF volunteers, where he can laugh and play, and not have to think about his doctor appointments and health concerns. He has his NF family, and this is powerful.

The NF Forum has lit a fire in me! I am now spending my days thinking of ways I can do more for CTF. How can I get the word out? How can I raise more money? Who can I talk to? The biggest thing I realized at the Forum was that CTF used to be very small. It has grown into a huge organization simply because of volunteer parents and NF heroes that have made it happen.

I am so lucky to have been born into this NF family when I was! It is already a strong family; I just need to keep adding to it and helping it grow even stronger. And no, we still do not have a cure for NF, but CTF is doing amazing things in the field of NF, and CTF does amazing things for this community. Huge advancements are being made. Great things are happening. I’m so proud to be in this fight. I am very confident that together we will End NF!