Raising Awareness the Austin 1st Way: Rare Disease Day 2026

Rare Disease Day (RDD) is an annual global observance dedicated to increasing public understanding and awareness of rare diseases and highlighting the challenges faced by millions of individuals and families.

Observed each year on the last day of February, the rarest date on the calendar, it symbolizes the unique and often complex nature of rare conditions.

While Rare Disease Day is global in scope, for Austin 1st its impact is profoundly local. RDD represents awareness in action, through classrooms, sports, proclamations, and community-wide participation.

Understanding Rare Diseases

According to the National Institutes of Health (NIH), a disease is considered rare if it affects fewer than 200,000 people in the United States. Yet collectively, rare diseases affect more than 25 million Americans, nearly half of whom are children.

In Alabama 400,000+ people are affected, that is over 10% of the state population.

There are over 7,000 known rare diseases, and approximately 90% have no FDA-approved treatment. The journey to diagnosis takes an average of five years or more, often involving multiple specialists, testing cycles, and misdiagnoses.

Rare Disease Day exists to bring visibility to these realities, and to ensure that families navigating rare conditions are not invisible within their own communities.

The Story Behind the Mission

A1F was created in honor of Anthony “Austin” Terling Jr., born in June 2013 with an ultra-rare genetic condition known as UBA5 Mutation. His diagnosis came after four years of uncertainty. This was back in 2017, at the time he was one of the first people in the United States to be diagnosed with his particular gene mutation - making his condition an ultra rare disease.

For the parents of Austin, Anthony & Lindsey, this is truly when they started the rare disease journey.

To this day,

less than 50

in the entire world

have been diagnosed with UBA5 Mutation. 

THIS is why Rare Disease Day is so important to not only A1F but the rare disease community. Each year we strive to get more and more individuals and groups involved with celebrating and spreading the word about the importance of rare disease awareness. Over the past 5 years we have been truly humbled by the amount of interest and support we’ve received in helping us spread awareness. 

Although Austin's years were limited, his impact continues through the Foundation’s mission, transforming awareness into meaningful community engagement and impact.

Rare Disease Day reflects that commitment.

For the Terling family, raising awareness started well before they established the foundation. Selling handmade candles to friends and family, creating and selling the first t-shirts that would become the future A1F brand, and understanding Austin’s condition enough to be able to explain it to others.

In a lot of ways, Anthony and Lindsey knew more about Austin's condition than some of his medical team. In the beginning of the rare disease journey, it was only family, friends and the small group of families that had already received the same diagnosis as Austin that were starting to work to raise awareness.

This was not a condition you could just Google to find resources and information for. The doctors and the other UBA5 families they connected them with became their only source of information and hope.

Anthony and Lindsey have continued to keep Austin’s legacy alive as well as finding new ways to inform people about rare diseases and why it’s so important to care about rare.

Making A Difference

Through Sports

The Foundation extends Rare Disease awareness through the power of sports. Sports bring people together from all walks of life. Rare Disease Games, also known as "Blue Out Games", are sporting events dedicated to raising awareness one game at a time.

Youth softball and college soccer teams from Alabama and North Carolina participate in these special “Blue Out” games. Teams take the field wearing blue accessories, warm up shirts, socks, or ribbons in recognition of Austin 1st and those affected by rare diseases.

Through Proclamations

A1F received a proclamation from the Mayor of the city of Auburn, Alabama, officially naming February 28, 2023 as ‘Rare Disease Day’ in the city.

Through Golf

In three short years Aces Fore Austin has generated $101,000 in donations to Children’s Hospital of Alabama, UAB's Undiagnosed Disease Program, and OHSU's Drug Repurposing Research study led by Dr. Jonathan Pruneda, in partnership with Raiden Science Foundation (another UBA5 family led foundation in Oregon).

Through The Classroom

Starting in 2023, A1F board member, Kelly Jarrett, began utilizing Rare Disease Day as a way to teach her Kindergarten class about rare diseases. Grade-level slideshows, coloring workbooks, projects and even a blue glow dance party. She has created a curriculum for an entire school day with the single goal of spreading awareness for those affected by rare diseases and teaching young minds about the power of giving.

This year the entire elementary school of Polo Ridge is involved, all the way from North Carolina! Anthony & Lindsey’s youngest son, Sullivan’s, current and previous elementary classes and school also participate in Kelly’s Rare Disease Day lesson plans and activities.

Thousands of young minds have been impacted by all the teachers and administrators who believe in our vision that that compassion and empathy are created early in life.

To show how full circle this has become, Austin was a student at one of these elementary schools (Richland Elementary in Auburn, AL) before he could no longer attend due to his condition.

To say this is a gesture that's deeper than just spreading awareness.

These resources equip teachers with tools to help students understand:

• What it means for something to be “rare”

• Why some people face unique health challenges

• The importance of kindness and advocacy

• How small actions can create big change

By engaging elementary-aged children, the Foundation fosters a generation that sees difference not as something to fear, but as something to understand and support.

Rare Disease Day becomes more than a concept. It becomes a lived experience for young students learning what it means to care for others.

Join the Movement in 2026

This Saturday, February 28, 2026, the Austin 1st Foundation invites everyone to participate by:

• Wearing blue or Austin 1st swag

• Share your photos by emailing us @ austin1stfoundation@gmail.com

  OR

• Tag us on social media with your blue or A1F swag on

• Share rare disease information

• Visit austin1st.org to learn more

Rare Disease Day is a reminder that behind every statistic is a story, and behind every story is a community capable of compassion.

Through classrooms, sports, advocacy through elected officials, and collective action, awareness becomes more than a message. It becomes a movement.

Rare is not invisible. Rare is not alone.

And together, we continue turning awareness into action.

SUPPORT AUSTIN 1ST

Awareness Is Our Mission

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.