Austin: the journey to a better tomorrow

05/17/2026

Today is World Neurofibromatosis Awareness Day.

NF is not rare to the families living through it.

It’s surgeries. It’s chemotherapy. It’s uncertainty. It’s watching children endure things no child should have to face.
But it is also resilience. Advocacy. Research. Community. And hope.

Over the past year, we’ve taken Austin’s story from hospital rooms to city halls, state leaders, and the halls of Congress to help raise awareness for NF and push for continued research and support for families affected by it.

This week, both the City of St. Louis and St. Louis County officially recognized Neurofibromatosis Awareness Week.
We are deeply grateful to every doctor, nurse, researcher, advocate, elected official, friend, and family member who has stood beside us.

Awareness matters. Research matters. Funding matters.

And kids like Austin matter.

05/16/2026

We Hope to put Missouri in these photos next year!!

05/15/2026

Today was one of those days that is hard to put into words. ❤️

Over the past several years, Austin’s journey with Neurofibromatosis Type 1 (NF1) has included brain tumors, hydrocephalus surgeries, chemotherapy, chronic pain, hospital stays, procedures, setbacks, and now participation in a first-of-its-kind clinical trial using Strensiq in hopes of helping heal the non-union in his arm.

But today wasn’t about hospitals.
Today was about hope.

Austin was surprised with his official Make-A-Wish reveal celebration surrounded by classmates, teachers, friends, and family as he learned his wish to travel to Atlantis in the Bahamas is officially being granted this July. Seeing the excitement, support, and love from everyone around him was something we will never forget.

We also recently had the incredible honor of receiving official proclamations recognizing Neurofibromatosis Awareness Month and NF awareness efforts here in the St. Louis area. To see Austin’s journey helping bring awareness to a condition that affects so many families means more than we can explain.

From Washington D.C. advocacy meetings… to hospital rooms… to school celebrations… to City Hall… this journey has been overwhelming at times, but moments like these remind us why we keep pushing forward.

NF1 is often invisible to the world until it isn’t. Behind the scenes are children fighting battles most people never see.
Today, Austin got to simply be a kid dreaming about the ocean, water slides, dolphins, and adventure — and that means everything.

We also want to express our deepest gratitude to the incredible physicians and medical teams who continue to walk this road beside Austin with extraordinary diligence, compassion, and care. Thank you to Dr. Sheel Pathak, Dr. Gary Gottesman, Dr. Nicole Brossier, Dr. Maria Galardi, Dr. Charles Goldfarb, Dr. Sean McEvoy, and the many other specialists, nurses, therapists, and providers helping guide Austin’s care every single day. Your dedication to children like Austin truly changes lives.

Thank you as well to:

Make-A-Wish Missouri & Kansas
Austin’s amazing school, classmates, and staff
everyone helping raise awareness for NF
our friends, family, and supporters
and every person who continues to walk beside our family through this journey
And maybe the coolest moment of all…
as we were leaving downtown after City Hall, a bald eagle flew over the park near the Eagleton courthouse. Somehow it just felt symbolic — strength, resilience, and hope moving forward.

One step at a time. 💙💚

05/15/2026

05/12/2026

💙💚 SHINE A LIGHT ON NF 💚💙

May is Neurofibromatosis Awareness Month — a time to raise awareness for the millions of children and families impacted by NF around the world.
A few things many people don’t realize about NF:

• NF is a genetic condition, but up to 50% of children diagnosed have no family history at all.
• Tumors caused by NF can grow deep inside the body with no visible signs or symptoms.
• NF can affect the brain, nerves, bones, vision, mobility, learning, and development — and every child’s journey is different.

Our family has seen firsthand how difficult and unpredictable NF can be, but we’ve also seen incredible resilience, compassion, research, and hope.

This month we are honored to help raise awareness across St. Louis and Missouri while continuing to advocate for children like Austin and so many others fighting NF every day.

Awareness leads to understanding.
Research leads to hope.
And hope changes lives. 💙💚

05/11/2026

Today was another meaningful step in raising awareness for Neurofibromatosis (NF).

We were honored to receive official proclamations recognizing Neurofibromatosis Awareness Week from both the City of St. Louis and St. Louis County. These recognitions help shine a light on the thousands of children and families living with NF and the urgent need for continued research, awareness, and support.

💙💚 NF1 affects approximately 1 in every 3,000 children worldwide and can cause tumors to grow on nerves throughout the body.

💙💚 NF can impact the brain, spinal cord, bones, vision, and many other systems — and every child’s journey with NF is different.

Austin’s journey has included brain surgery, chemotherapy, hydrocephalus, and ongoing orthopedic complications, but we remain committed to turning his story into advocacy and hope for other families.

We are incredibly grateful to the leaders, medical teams, advocates, and community members helping bring awareness to Neurofibromatosis and rare pediatric disease research.

05/10/2026

May is NF Awareness Month 💚💙

Neurofibromatosis Type 1 (NF1) affects approximately 1 in every 2,500–3,000 people and can cause tumors to grow on nerves throughout the body. NF1 can impact the brain, bones, vision, skin, and nervous system, and symptoms can vary dramatically from person to person — even within the same family.

Many people have never heard of NF, yet families across the country battle it every single day.

St. Louis and Washington University have become leaders in NF research, treatment, and clinical care, with families traveling from across the United States seeking specialized treatment and hope.

This month, please help spread awareness, support research, and stand beside the children and families facing NF.

💚 Early diagnosis matters
💚 Research matters
💚 Awareness matters

05/07/2026

Today was a meaningful day for our family.

We had the honor of receiving a proclamation from St. Louis County officially recognizing May 17–23, 2026 as Neurofibromatosis Awareness Week. Seeing NF recognized at the county level means more than we can properly put into words. Awareness leads to understanding, research, support, and ultimately hope for families like ours.

Austin unfortunately wasn’t able to join us today because he was at school, but his little sister Paisley proudly stepped in to help accept the proclamation after her appointment at the NF Clinic.

We are incredibly thankful to share that Paisley received a clean bill of health today and does not need to return for another year. As many of you know, NF affects every individual differently, and we never take good appointments or good news for granted.

Standing there today with and in the background was also a reminder of how fortunate we are to live in a region that is recognized worldwide for excellence in NF research, treatment, and advocacy.

Thank you to St. Louis County Executive Sam Page and everyone who continues supporting NF awareness, research, and the families walking this journey every day.

05/02/2026

05/01/2026

May is NF Awareness Month 💙💚

Our son Austin battles Neurofibromatosis (NF)—a rare condition that affects nerve growth and can lead to tumors throughout the body.

Most people have never heard of NF… until it impacts someone they love.

We’re sharing his journey to bring:
✔️ Awareness
✔️ Support
✔️ Progress

Because kids like Austin deserve better.
Help us spread the word. Share. Support. Stand with us.

WashU Medicine

05/01/2026

It's May and NF Awareness Month is here! 💙

Whether you walk, share, or simply spread the word, every action this month matters. Here's how to get involved:

👟 Walk4NF – join our community at a walk event near you and help us reach our goal! Register at walk4nf.org.

📄 Challenge – print a free flyer and post it everywhere. Work, store, library, your local coffee shop. Snap a photo and use our hashtags when you do! You may even win a prize! See more about the NF Everywhere Challenge and awareness tips here: nfmidwest.org/nfeverywhere

🛍️ Shop our store – grab NF awareness gear and sport it all month

💙 Turn your porch lights blue and green – show your NF support right from your front door

📜 Get a proclamation – reach out to your town or county to declare May NF Awareness Month in your community

No one fights alone. Let's make NF impossible to ignore this May.