Parenthood is about raising the child you have, not the child you thought you’d have.
Anthony and Lindsey Terling shared this message in their video “The Austin Way!” where the parents discussed their experience with their son Austin’s rare disease. When Austin was diagnosed with a rare disease, his parents found themselves thrust into a new space, navigating an uncertain terrain.
Although Austin’s rare disease ultimately claimed his life, his nine years on earth meaningfully and positively impacted his parents. He imbued them with a sense of purpose: to support families in Alabama and beyond facing rare diseases through community, awareness, and fundraising.
Thus, the Austin 1st Foundation was born. As the Foundation explains:
A majority of funds raised through A1F go to support research projects and clinical programs focused on advancing diagnosis resources for undiagnosed diseases and creating FDA-approved treatment options and care resources for the UBA5 gene mutation, and all other rare diseases.
The 2nd Annual Aces Fore Austin Golf Tournament
On June 10, 2024, the Austin 1st Foundation held its second annual Aces Fore Austin golf tournament, a charity golf scramble. Funds raised from the tournament, in addition to supporting the Foundation, also go towards the University of Alabama at Birmingham’s Undiagnosed Disease Program, as well as the Raiden Science Foundation’s drug repurposing project with Oregon Health & Science University.
Outside of raising these valuable funds – as many people within the rare disease community know, research and drug development can be incredibly costly and time-consuming – the tournament also serves as a beacon of awareness for the rare disease space as a whole. There are more than 10,000 known rare disease and counting. As our medical field expands its understanding of genetics, this number is only expected to rise. After all, an estimated 72% of rare diseases have a genetic origin. One in every ten people within the United States has a rare disease. Yet these diseases are often poorly researched, poorly understood, and come with a long diagnostic delay.
Through awareness-centric initiatives like this charity golf tournament, the rare disease community benefits by broadening education and understanding.
