Each May, communities across the country recognize Neurofibromatosis (NF) Awareness Month — a time to increase understanding, visibility and support for individuals and families affected by NF.

This year, Detroit is helping lead those efforts with a month of public events, illuminated landmarks and community engagement designed to bring awareness to a condition often called “the most common rare disease you’ve never heard of.”

From a signature downtown event on World NF Awareness Day to skyline landmarks glowing blue and green throughout May, Detroiters will have multiple ways to learn more, show support and join the movement.

 

What is Neurofibromatosis?

Neurofibromatosis is a genetic disorder that causes tumors to grow on nerves throughout the body. While many tumors are benign, NF can also lead to serious complications including hearing or vision loss, disfigurement, learning differences and, in some cases, cancer.

NF affects approximately 1 in 2,500 people worldwide, regardless of age, race or gender. Yet despite how many families it impacts, NF remains widely misunderstood and underrecognized.

That is why awareness matters, and why community participation can make a real difference.

 

May 17: NF Awareness in Action at Nick Gilbert Way

The centerpiece of Detroit’s NF Awareness Month activities is NF Awareness in Action, a free public event taking place on World NF Awareness Day, May 17. This event is free and open to the public, and is hosted by our sister organization, NFX.

📍 Nick Gilbert Way
1208 Woodward Ave., Detroit
🕛 Noon to 4 p.m.

Hosted by NFX, the sister organization of the Gilbert Family Foundation, the event is designed to bring together advocates, families, supporters and curious community members for an afternoon of education, creativity and connection.

 

What to Expect

Visitors can enjoy a family-friendly experience featuring:

  • Interactive stations such as Show Us Your Bow Tie and Plant a Seed
  • Live entertainment and music
  • Art experiences and family activities
  • Face painting and hands-on experiences for children
  • Educational exhibits about NF and current research
  • Community vendors and nonprofit partners
  • Tribute installations honoring Nick Gilbert

The event is intended not only to inform, but to create a shared experience that turns awareness into action.

 

Shine a Light on NF: Landmarks Glow Blue and Green

Throughout May, Detroit – like cities around the world – will also participate in Shine a Light on NF, a global awareness initiative led by the Children’s Tumor Foundation.

Landmarks across the city will be illuminated in blue and green, the official colors of NF awareness.

 

Participating Detroit Locations Include:

  • Hudson’s Detroit
  • Nick Gilbert Way
  • GM Renaissance Center
  • Michigan Central Station
  • Huntington Place
  • Ford Field
  • Book Tower
  • One Campus Martius
  • Ally Detroit Center

 

Additional participating locations in Cleveland include:

  • Terminal Tower
  • Rocket Arena

It’s our hope that these public activations will help raise awareness about NF, while connecting the NF community with residents and visitors to Detroit.

 

Why Detroit’s Role Matters

Detroit’s NF Awareness Month efforts are deeply connected to the mission of both Gilbert Family Foundation and NFX.

After their son, Nick Gilbert, was born with NF1, Dan Gilbert and Jennifer Gilbert began their commitment to advance NF research and viable treatment options for patients living with the disease.

In 2015, they established the Gilbert Family Foundation to accelerate groundbreaking research and support innovative treatment pathways. While Nick sadly passed away in 2023 due to complications from the disease, his legacy of hope and optimism continues to fuel that mission. To date, Gilbert Family Foundation is recognized as the largest private funder of NF research in the world.

NFX was created to expand awareness, grow community engagement and generate support for that mission. The organization also hosts the annual beNeFit gala, which over the past thirteen years has helped raised nearly $87M to advance NF research.

Inspired by Nick’s legacy, both organizations remain focused on improving outcomes for families and helping drive progress toward better treatments — and ultimately, a cure.

 

How to Get Involved This May

There are many ways to support NF Awareness Month:

  • Attend NF Awareness in Action event on May 17
  • Visit Detroit landmarks lit up in blue and green
  • Share photos and stories on social media using #NFAwarenessMonth #ShowUsYourBowtie #NFX
  • Learn more about NF and share resources
  • Support ongoing research and advocacy efforts

Even small actions can help create greater understanding and momentum.

 

Awareness in Action

Detroit’s approach to NF Awareness Month shows what awareness can look like when a city comes together. This May, every landmark illuminated, every bow tie worn and every conversation started helps bring NF out of the shadows – and closer to a future with a cure.