Building Awareness Through Community: NFX’s Inaugural NF Event

On May 17, 2026, in honor of World NF1 Awareness Day, NFX hosted its inaugural NF Awareness Community Event at Nick Gilbert Way in the heart of Downtown Detroit. The event was created not only to celebrate the courage, strength, and resilience of the NF community, but also to raise awareness about neurofibromatosis (NF) amongst the broader Detroit community.

The event kicked off at noon on a beautiful sunny Sunday at Nick Gilbert Way. Since NF is a rare disease, the goal of the event was to create an inviting and engaging experience that encouraged Detroiters to stop in to learn about NF. Every detail of the event was intentionally designed to connect attendees back to awareness, education, advocacy, and community.

Guests were welcomed with live entertainment provided Michigan Entertainment and Talent, featuring an interactive bubble performer and balloon twister. The activations held special meaning, as owner Natasha Dean is also a member of the NF community. It was important to us that every interaction throughout the event connected back to the NF journey.

The event also featured several free interactive stations facilitated by Bedrock’s premier experiential partner, Decked Out Detroit, an organization known for curating unique activations and experiences throughout the city year-round.

One of the featured experiences was our “Show Us Your Bow Tie” station, where participants had the opportunity to decorate their own bow ties as a reflection of their personal style and creativity. While crafting their designs, guests learned about NFX’s the Why behind the Bow Tie?, Nick Gilbert’s story, and how his iconic bow tie became a powerful symbol that we use to raise awareness for NF.

At our “Plant a Succulent & Let It Grow” station. Participants decorated terracotta pots before selecting a succulent to re-pot and take home with them. Throughout the experience, volunteers and team members shared facts about NF and answered questions from attendees. The inspiration behind the station was rooted in the idea of continued growth and remembrance, that each time participants care for their new “plant baby,” they would also remember the conversations they had and the awareness they gained about NF. By creating meaningful and memorable experiences, we hope to spark curiosity, encourage learning, and inspire others to share what they’ve learned within their own communities.

Another activation that drew an incredible crowd was our “Patch for a Purpose” station featuring local vendor Ink Detroit. Guests had the opportunity to browse and purchase Ink Detroit’s signature apparel and custom patches. While also purchasing an exclusive TGP bow tie patch that could be applied to merchandise on-site. The station became an exciting and interactive way for attendees to visibly show their support for NF awareness.

Throughout the afternoon, approximately 500 guests stopped by the event. Whether they were intentionally attending the festivities or simply passing through on their way to the Detroit Tigers game. Regardless of how they arrived, each interaction was an opportunity to spread NF awareness, spark conversation, and strengthen community connections.

We are so thankful that we were able to celebrate such a successful World NF1 Awareness Day in the heart of Detroit. This inaugural event was a powerful reminder of what can happen when community, advocacy, storytelling, and awareness come together with purpose. NFX looks forward to continuing to create meaningful spaces that educate, inspire, and uplift the NF community for years to come.

If you’re interested in staying up to date on what NFX is working on or learning more about upcoming events and initiatives, connect with us or reach out to our team at team@nfxdetroit.org