Each May, communities across the country recognize Neurofibromatosis (NF) Awareness Month -- a time dedicated to increasing understanding, visibility and support for those affected by the condition.
Neurofibromatosis is a genetic disorder that causes tumors to grow on nerves throughout the body. While many tumors are benign, NF can lead to complications including hearing and vision loss, disfigurement, learning differences and, in some cases, cancer.
NF Type 1 (NF1) is the most common version of the disease and affects approximately 1 in 2,500 births. NF doesn’t discriminate, as it impacts all genders and ethnicities worldwide, with widely varying manifestations from patient to patient.
Despite affecting so many people, NF is often misunderstood or overlooked, which makes awareness efforts especially important.
This year in Detroit, those efforts are becoming more visible and interactive.
From a public event along Nick Gilbert Way to citywide landmarks illuminated in blue and green, NF Awareness Month is becoming something people can experience, not just read about.
NF Awareness in Action: Nick Gilbert Way
At the center of Detroit’s efforts is a public event designed to bring people together.
Held on World NF1 Awareness Day on May 17, NF Awareness in Action invites advocates, families, supporters and community partners for an afternoon focused on connection, creativity and learning. The event is hosted by NFX, the sister organization of Gilbert Family Foundation that drives bold, high-impact research to discover and develop targeted treatments for NF1.
The NF Awareness event on May 17th will take place in the high-traffic downtown corridor at Nick Gilbert Way. This free, family-friendly event is open to all -- whether you’re part of the NF community or learning about it for the first time.
What to expect
Visitors can explore interactive stations and activities designed to engage and inform.
One signature experience, “Show Us Your Bow Tie,” offers a fun, shareable way to participate and honor a symbol tied to NFX. The bow tie is widely known in the NF community as a symbol made famous by Nick Gilbert, who famously wore bowties whenever possible. The bowtie also highlights how NF looks different for every patient.
Nearby, the “Plant a Seed” station provides a hands-on moment that represents growth and hope.
Interactive learning stations will also help attendees better understand NF and highlight how awareness supports research and care.
Local vendors and community partners will be on-site, along with opportunities to purchase custom bow tie patches that benefit NF research.
Guests can enjoy live entertainment, music, art, face painting and activities. Large-scale installations and tribute elements that honor Nick Gilbert will add meaningful moments throughout the experience.
[Related: Family with personal connection aims to cure “most common rare disease”]
No tickets are required, though strong attendance is expected due to nearby events.
More than anything, the event is designed to spark curiosity, encourage conversation and turn awareness into something people can actively experience.
A local event, part of a global movement
The May 17 gathering aligns with World NF1 Awareness Day and connects Detroit’s efforts to a broader global initiative.
Across the world, organizations and communities will also be working to raise awareness about NF.
By participating locally, Detroit residents become part of a much larger moment of recognition and advocacy.
Lighting the city: Shine a Light on NF
Another visible part of this year’s campaign is the Shine a Light on NF initiative, led by the Children’s Tumor Foundation.
Throughout May, landmarks across Detroit -- and around the world -- will be lit in blue and green, the official colors of NF awareness.
In Detroit, participating sites include:
- Hudson’s Block & Hudson’s Tower
- Nick Gilbert Way
- GM Renaissance Center
- Michigan Central Station
- Huntington Place
Other partners joining the effort will include Ford Field, Book Tower, One Campus Martius and Ally Detroit Center.
In Cleveland, participating sites include Terminal Tower and Rocket Arena.
Across cities nationwide and globally, skylines will become symbols of awareness and make an often-overlooked condition more visible.
Why awareness -- and community -- matters
NF is sometimes called “the most common rare disease.” Despite affecting thousands of individuals and families, it remains widely misunderstood.
That’s why awareness matters.
Greater visibility can lead to earlier understanding, stronger support systems and increased advocacy for research and treatment.
But awareness doesn’t happen on its own -- it requires participation.
Whether someone attends an event, shares information or recognizes illuminated landmarks, each action helps build momentum.
Together, these efforts create awareness that is both seen and felt.
About the mission behind the movement
Much of Detroit’s NF Awareness Month activity is driven by organizations actively working to advance research and improve outcomes.
Gilbert Family Foundation began a mission to accelerate a cure for NF1, focusing primarily on research efforts. The commitment began with Dan and Jennifer Gilbert when their son Nick was born with the condition.
In 2015, the couple established Gilbert Family Foundation to advance groundbreaking NF research and support innovative ideas. NFX was established as the fundraising arm of the larger organization’s mission to accelerate a cure. NFX was created to drive awareness and donations in support of this critical work.
Tragically, Nick passed away from complications related to NF1 in May 2023.
Gilbert Family Foundation and NFX, inspired by Nick Gilbert, are dedicated to raising awareness, accelerating progress toward better treatments and, ultimately, a cure.
How to get involved
There are several ways to take part in NF Awareness Month this May:
- Attend the May 17 event on Nick Gilbert Way
- Visit Detroit landmarks illuminated in blue and green
- Share your experience on social media by using #NFAwarenessMonth #ShowUsYourBowtie #NFX
- Support research and advocacy efforts
Even small actions can help expand awareness and drive progress.
Awareness in action
Detroit’s approach to NF Awareness Month shows what community-driven awareness can look like.
It’s visible. It’s participatory. And it’s growing.
As momentum builds, it brings greater attention to NF and strengthens the push for better treatments and outcomes.
NF Awareness in Action will be held May 17 from noon to 4 p.m. at 1208 Woodward Ave. in Detroit.
To learn more about the event, click or tap here.