NFX

05/29/2026

When Sahil Shah was diagnosed with NF1 as a child, he struggled to find a community of other young people who understood what he was experiencing.

Years later, he and his brother Shilp transformed that experience into Sketch NF, a nonprofit that empowers children living with neurofibromatosis to share their stories through art while building meaningful connections with others in the NF community.

Their journey is a powerful reminder of how lived experiences can inspire advocacy, creativity, and lasting impact.

Read their full story here: https://www.nfxdetroit.org/2026/05/29/tell-us-your-story-sahil-and-shilp-shah-founders-of-sketchnf/

💚 Every sketch shared. Every story told. Every connection made.

05/27/2026

If you haven't heard, CTF recently relaunched the NF registry. If you had an account on the previous platform, be sure to log in and get set up on this new and improved interface. It is quick! And if you've never registered before, NF patients are encouraged to join. This is a great way to connect with research studies and stay up to date on some of the latest studies.

The NF Registry has officially relaunched on the National Organization for Rare Disorders, Inc. (NORD)® IAMRARE® platform this World NF Awareness Day.

By sharing your experience with NF, you help researchers accelerate drug discovery, improve care, and advance treatments for the entire NF community.

As a participant, you’ll have access to the latest NF discoveries to guide your care and receive personalized updates on research studies and clinical trial opportunities.

Join the patient-powered research effort → nfregistry.org

05/26/2026

On May 17, 2026, in honor of World NF1 Awareness Day, NFX hosted our inaugural NF Awareness Community Event at Nick Gilbert Way in Downtown Detroit.

What began as a vision to create a space centered around awareness, advocacy, education, and celebration turned into an incredible afternoon filled with community connection and meaningful conversations about neurofibromatosis (NF).

From our “Show Us Your Bow Tie” station and succulent planting experience to live entertainment and our “Patch for a Purpose” activation, every aspect of the event was intentionally designed to help raise awareness about NF while creating memorable experiences for attendees of all ages.

We are so grateful to every volunteer, vendor, partner, supporter, and community member who helped make this event possible. Approximately 500 guests stopped by throughout the day, helping us spread awareness in the heart of Detroit on such an important day for the NF community.

Thank you for helping us make our inaugural NF Awareness Community Event such a success 💙💚

Read the full event recap blog post here: https://www.nfxdetroit.org/2026/05/21/nf-awareness-in-action-event-recap/

05/22/2026

05/21/2026

Dan Gilbert honors his son Nick by funding research into neurofibromatosis, the rare disease that took Nick’s life.

05/21/2026

Every NF journey is unique, but at the heart of so many stories is the power of family, advocacy, and community. 💙💚

When Tyler Neppl was diagnosed with NF1 as a baby, Shaun and his family were suddenly navigating a world they knew nothing about. What followed was a journey filled with uncertainty, resilience, awareness, and an unbreakable father-son bond.

From educating classmates about NF to building community through walks, fundraisers, and advocacy, Shaun and Tyler’s story is a powerful reminder that awareness starts with conversation and connection.

Today, Tyler is living life on his own terms traveling, exploring photography, spending time with friends, and continuing to show the world that NF is only one part of a much bigger story.
Their story is one of courage, confidence, and the impact that support and understanding can have on a family navigating NF.

📖 Read Shaun & Tyler’s full Tell Us Your Story feature:
Facebook: Read the full story here ⬇️
https://www.nfxdetroit.org/2026/05/19/tell-us-your-story-shaun-and-tyler-neppl/

05/15/2026

NF Awareness in Action is Almost Here! 💙💚

This Sunday, May 17, join us at Nick Gilbert Way in Downtown Detroit for an afternoon of community, creativity, and awareness as we come together to shine a light on neurofibromatosis (NF).

Bring your family and friends and enjoy this free all-ages community event featuring:

✨ Interactive activities
🪴 Creative stations
🎶 Live entertainment
🧢 Featured Retail Vendor: Ink Detroit
🎨 Custom patches, Detroit-inspired apparel & more
💙 Opportunities to learn more about NF and support the community

Whether you’re part of the NF community or learning about NF for the first time, we invite you to come out, connect, and help raise awareness together.

We can’t wait to see you there! 🎉

05/11/2026

This NF Awareness Month, we want to show what awareness can look like when we come together as one.

On May 17, NFX will be hosting NF Awareness in Action, a free public event that will bring advocates, families, and the community together and feature educational exhibits about NF and current research, community vendors and nonprofit partners, and art experiences and family activities.

The event will take place at Nick Gilbert Way, starting from 12 PM – 4 PM.

Learn how you can get involved and support NF Awareness Month using the link in the comments.

05/11/2026

05/07/2026

⚾💙💚 NFX officially kicked off NF Awareness Month with our first-ever Community Night at Comerica Park during the Detroit Tigers game on May 1!

106 members of Metro Detroit’s NF community joined us as NFX was recognized as the Charity of the Game. Despite less-than-ideal weather, the excitement and sense of connection throughout the evening never wavered.

This night was about more than baseball, it was about creating a space where individuals and families impacted by neurofibromatosis could come together, feel supported, and celebrate community. Seeing so many familiar and new faces throughout the ballpark was incredibly meaningful and a powerful reminder of why community matters.

Thank you to everyone who joined us and helped make this unforgettable evening possible! 💙💚

🎥 Enjoy this quick highlight reel from the night, and if you’d like to read more about the event, click here: https://www.nfxdetroit.org/2026/05/07/strike-out-nf-community-outing/