Written by Kelly Jarrett, Austin's Aunt
As we approach Rare Disease Day 2025 (Friday, February 28), my heart has a a mix of emotions: gratitude, hope, and a deep desire to honor my nephew Austin’s legacy. Austin’s journey with UBA5, a rare degenerative disease, profoundly shaped our family and inspired the creation of the Austin 1st Foundation. Today, as an aunt to Austin and a Kindergarten teacher, I am privileged to use my dual roles to champion awareness and support for those living with rare diseases.
Rare Disease Day, celebrated annually on the last day of February, is a global initiative that shines a spotlight on the 300 million people worldwide affected by rare diseases, as well as their families and caregivers. This year, the Austin 1st Foundation continues its mission to be Champions for Rare Diseases by raising awareness, funding research, and providing critical support to families in Alabama and beyond. The slogan of how to live, #CareAboutRare, reminds us that even the smallest actions can lead to big change.
A Personal Journey: Austin’s Impact
Watching Austin face unimaginable challenges with resilience and courage was both heartbreaking and inspiring. He had an infectious smile that lit up the darkest days and a spirit that taught us the true meaning of strength. His journey with UBA5 was a reminder of the urgent need for research, awareness, and support in the rare disease community. As an aunt, I felt an immense responsibility to ensure his story and the lessons he taught us would never fade.
Joining the board of the Austin 1st Foundation gave me a platform to channel my love for Austin into meaningful action. We focus on four key areas: RESEARCH, AWARENESS, CHANGE, and SUPPORT. Each pillar represents a commitment to making a tangible difference for families navigating the rare disease journey. Through our work, we aim to provide hope and resources to those who, like Austin, face unique and often isolating challenges.
Rare Disease Awareness in the Classroom
As a kindergarten teacher at Polo Ridge Elementary in North Carolina, I see firsthand the potential of young minds to drive change. Children are naturally curious, compassionate, and eager to learn. These qualities make them powerful partners in spreading awareness about rare diseases. Last year, I developed a classroom project for Rare Disease Day that aimed to educate and inspire my students in a way that was both fun and impactful. The success of that initiative has fueled a vision to expand it into an annual event across all grade levels.
The project involves storytelling, art, and interactive activities designed to help students understand what rare diseases are and how they affect people’s lives. For example, we read age-appropriate books that highlight themes of inclusion and empathy, and the children create artwork celebrating diversity and strength. We also discuss the importance of supporting friends and families who might face unique challenges. For young kids I teach them about zebras and how each one has a unique stripe patterns. This connection helps them understand what the word rare means. We mad e zebra craft to connect them to this lesson.
This year, I’ve collaborated with the Austin 1st Foundation to develop classroom-ready materials and supplies that other teachers can easily implement. These resources include lesson plans, activity guides, and even a short video featuring families from the rare disease community sharing their stories. The vision is to create a scalable program that can be adopted by schools nationwide, ensuring that Rare Disease Day becomes an integral part of the academic calendar.
The Ripple Effect of Awareness
The response to the Rare Disease Day project has been overwhelmingly positive. Parents have shared how their children came home eager to talk about what they learned, and colleagues have expressed interest in bringing the project to their own classrooms. One particularly touching moment came when a student’s artwork—a colorful drawing made at home after rare disease day with the words “Be Kind, Be Strong, Be Rare”—was given to me and he said I want to share about Austin. That shows that even small actions can create ripples of awareness.
Our goal is to foster a generation that not only understands rare diseases but also empathizes with those affected by them. By engaging students at a young age, we hope to instill values of kindness, inclusion, and advocacy that will carry into adulthood. The Austin 1st Foundation’s support has been instrumental in bringing this vision to life, and I am excited about the potential to expand the program to more schools in the coming years.
How You Can Help
Rare Disease Day 2025 is an opportunity for everyone to make a difference. Whether you’re a teacher, parent, student, or community member, there are countless ways to get involved:
Spread the Word: Share the Austin 1st Foundation’s mission on social media and send this blog link to your circle. Awareness is the first step toward change.
Participate in Events: Join or organize events in your community to raise funds and awareness for rare diseases.
Support Education Initiatives: Encourage your local schools to adopt the Rare Disease Day project. The Austin 1st Foundation provides all the materials you need to get started.
Donate: Contributions to the Austin 1st Foundation directly support research, awareness campaigns, and resources for families affected by rare diseases. Visit www.austin1stfoundation.org to learn more.
Volunteer: Offer your time and skills to support the Foundation’s initiatives. Every effort counts.
Rare Disease Day is sponsored in the United States by the National Organization for Rare Disorders (NORD®), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases.
Looking Ahead
As we honor Austin’s memory and the millions of others impacted by rare diseases, I am reminded of the power of community. Together, we can drive the change needed to improve lives and create a more inclusive world. Rare Disease Day 2025 is not just a day of awareness; it’s a call to action. Through the Austin 1st Foundation and initiatives like the classroom project, we are building a legacy of hope, education, and advocacy that will resonate for generations to come.
Let’s make this Rare Disease Day a turning point. Let’s champion rare diseases with compassion, determination, and unity. Let’s continue to #CareAboutRare #Austin1st #UBA5
Austin 1st Foundation is a 501 (c)(3) Public Charity - See the impact we make and support our mission to be Champions for Rare Disease by raising awareness and research dollars for families in Alabama & beyond.
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