NFX

09/28/2026

“Mom, we can help that family.”

At nine years old, Jamal saw another family navigating medical care and urged his mother, Valeria McConnell, to help. His compassion became the inspiration for Jamal's Helping Hands, an organization Valeria founded in his memory.

Our latest Tell Us Your Story feature shares Jamal’s story and how Valeria is carrying his vision forward by helping families affected by rare diseases and chronic illnesses navigate care, find resources, and feel less alone. Read the full story: https://www.nfxdetroit.org/2026/09/25/tell-us-your-story-valeria-mcconnell-and-jamals-helping-hands/

If you’re in or near Huntsville, Alabama, you can connect with the organization in person at Navigating Rare Together: Walk and Family Festival on Saturday, October 3, from 9 a.m. to 1 p.m. at The University of Alabama in Huntsville. The event will bring families, healthcare professionals, advocates, and supporters together around connection, resources, and hope.

Learn more about the event: https://www.jamalshelpinghands.org/events

08/18/2026

We are NFX and we are committed to creating a future without neurofibromatosis.

Inspired by the life and legacy of Nick Gilbert, NFX drives bold, high-impact research to discover and develop targeted treatments for neurofibromatosis type 1 (NF1). Together with researchers, partners, supporters and the NF community, we are working to solve the most pressing challenges facing people living with NF1.

Every discovery brings us one step closer to more answers, more treatment options and, ultimately, a cure.

Watch “We Are NFX” to learn more about who we are, what drives us and how you can join the fight to end NF: https://www.youtube.com/watch?v=bFdRp26zOWk

08/10/2026

Tell Us Your Story: Andrea Cosco—Building a Life Beyond Limitations

Born in Milan and raised in Rho, Italy, Andrea Cosco was diagnosed with neurofibromatosis type 1 (NF1) shortly after birth. Throughout his life, he has faced both visible and unseen challenges, including an optic pathway tumor, chronic fatigue, balance issues, and physical limitations that affect his everyday life.

Despite these challenges, Andrea remained determined to create a meaningful future. After earning a master’s degree and spending more than a decade working in biotechnology, he began pursuing a new dream: becoming a teacher.

Finding an NF support group also transformed Andrea’s journey by connecting him with others who understood experiences he once thought were his alone. Today, he advocates for stronger patient voices and greater recognition of the insights people living with NF bring to research, healthcare, and advocacy.

His message to others navigating their own NF journey is simple:

“Keep looking for solutions. Keep learning. Keep moving forward. You may have to find a different way to reach your goals, but that doesn’t mean you can’t reach them.”

Read Andrea’s full story to learn how resilience, curiosity, and community have helped him build a life beyond limitations. https://www.nfxdetroit.org/2026/08/06/tell-us-your-story-andre-cosco-building-a-life-beyond-limitations/

06/24/2026

Save the date for beNeFit XIV — an evening fully focused in curing NF.

Saturday, November 21st

@ Huntington Palace

06/23/2026

Thank you to every advocate, family, researcher, clinician, and supporter who continues to raise their voice for NF research. This encouraging step forward reflects the power of this community and commitment to help advance hope and progress for NF research.

House Proposes $25 Million for NF Research

We are pleased to announce that the House Appropriations Committee has included $25 million for the Congressionally Directed Medical Research Program – Neurofibromatosis (NF) Research Program in its Fiscal Year (FY) 2027 Defense spending bill.

The bill will be considered by House Appropriations Committee on June 24. House committee consideration is the first step in the approval process for FY27 spending bills. We will continue to keep you posted as the bill moves through Congress over the next several months.

This is an important and encouraging step in the process, though the funding is not yet final. It reflects the strength of advocacy across the NF community, including the work of NF organizations and advocates nationwide, as well as Congress’ longstanding support for NF research. We are deeply grateful to every patient, family member, advocate, researcher, clinician, and supporter who has raised their voice and helped demonstrate what continued federal investment can mean for scientific progress and the development of new treatments.

ctf.org/advocacy

06/08/2026

We’re excited to introduce our 2026 summer interns:

🎥 Dominic Carroll will be supporting the Marketing and Communications team for Gilbert Family Foundation and Rocket Community Fund.
⚙️Noah Katzman will be supporting the Operations team for Rocket Community Fund.
🧬Dan Ly will be supporting work for the beNeFit Gala for NFX.
⚙️Quinlen Lambert will be supporting the Operations team for NFX.
🔬Meetali Mohindra will be supporting the Curing NF team for Gilbert Family Foundation.

Join us in giving them a warm welcome! We can’t wait to see their growth and impact they will make across teams this summer.

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