Austin: the journey to a better tomorrow

05/30/2026

This is why constant check-ups, MRI's monitoring and screening is a non-negotiable for NF1 patients!

Know your risks with NF1. Individuals with NF1 have an increased risk for several types of cancer, including those listed, though this is not a complete list. 💙

Help spread awareness by sharing this and educating others this NF Awareness Month.

05/29/2026

Tomorrow we walk for the NF community.
For many people, Neurofibromatosis is something they’ve never heard of. For our family, it has meant brain tumors, chemotherapy, surgeries, uncertainty, hospital stays, clinical trials, and watching Austin fight battles no child should have to face.

But it has also introduced us to an incredible community of families, doctors, researchers, advocates, and supporters who refuse to give up.

Tomorrow, Team Austin will be participating in Walk4NF with NF Midwest to help raise awareness, support families, and fund research that brings us closer to better treatments and someday a cure.
I know this is short notice, but if Austin’s story has ever touched your heart, encouraged you, educated you, or inspired you, we would be incredibly grateful if you’d consider:
• donating,
• joining the walk,
• or simply sharing this post.

Every single share matters. Every dollar matters. Every voice matters.

Thank you for continuing to stand beside Austin and our family in this journey.

https://give.nfmidwest.org/fundraiser/7326580

Step Up for the NF Community with Me!

05/18/2026

Yesterday was World NF Awareness Day, but for our family, the mission doesn’t stop when the calendar changes.

Over the past several weeks, Austin and the NF community have been honored with:
• A proclamation from Governor Mike Kehoe recognizing World NF Awareness Day in Missouri
• A declaration from Lieutenant Governor David Wasinger recognizing Austin’s resilience and advocacy efforts
• Proclamations from the City of St. Louis and St. Louis County recognizing Neurofibromatosis Awareness Week

What makes this especially meaningful is that these recognitions are not just about Austin — they represent every family fighting neurofibromatosis, every child facing uncertainty, every parent sitting through scans and surgeries, and every doctor and researcher working toward better treatments and ultimately a cure.

Austin’s journey has included emergency brain surgery for hydrocephalus, chemotherapy for inoperable brain tumors, severe orthopedic complications from NF1 pseudoarthrosis, and now participation in a groundbreaking clinical trial through Washington University aimed at helping future children affected by NF.

But through all of it, he continues to stand tall, speak up, and represent this community with courage far beyond his years.

We are incredibly thankful to everyone who has supported these efforts — from local leaders and elected officials, to the medical teams, advocacy organizations, friends, and complete strangers who have encouraged Austin along the way.

And now, we keep going.

This summer, we’ll be bringing these recognitions with us to Washington DC during the America 250 events as we continue advocating for NF awareness, research, and the families affected by this disease.

Awareness month may end.

The fight doesn’t.

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