Casey's Story
Through newborn screening, Casey was diagnosed with Spinal Muscular Atrophy (SMA) at just five days old, a devastating genetic disease that affects muscle strength and movement. Before groundbreaking treatments were discovered, babies with SMA often did not live beyond the age of two. At 15 days old, Casey underwent gene therapy treatment, giving him a fighting chance and inspiring us with his strength and resilience. His journey fuels our mission to raise awareness, support families and fund research to ensure everyone affected by SMA has hope for a brighter future.
How it All Started
May-August 2023
In 2023, following Casey's diagnosis, we took our first big step toward making a difference by participating in the Cure SMA Walk-n-Roll. The incredible generosity of our family, friends, and community allowed us to raise over $25,000. Fueled by the outpouring of support and love, we knew we couldn't stop there.
August 2024 -
August 2025
Determined to make an even greater impact, we hosted our very first Cure for Casey Golf Outing. Thanks to the unwavering commitment of everyone who participated and supported the event we were able to raise an astounding $273,156 for Cure SMA to help fund critical research. In 2025, our second annual event brought in over $330,000, bringing our two year total to more than $600,000 raised for families impacted by families and advancing research toward a cure.
Going Forward
Committed to making a difference in Casey's life and the lives of others, our own non-profit, Cure for Casey was created.
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What started as one event, has grown into a mission - spreading awareness about spinal muscular atrophy, supporting families impacted by SMA, and funding the research needed to find a cure. Together, we've built something truly extradordinary, and we are just getting started.
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Donations made to Cure for Casey directly support the groundbreaking work at Cure SMA and the American Family Children's Hospital in Madison, WI. These funds help provide essential resources to families navigating the challenges of spinal muscular atrophy, ensuring they receive the support they need. Additionally, your generosity fuels critical research efforts to ultimately find a cure for SMA; focusing on breakthrough therapies and clinical trials aimed at improving the lives of those affected by the disease.
What is SMA?
Spinal Muscular Atrophy (SMA) is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. In those with SMA, the body produces insufficient levels of this SMN protein. Without it, these nerve cells can't function properly and eventually deteriorate, leading to progressive muscle weakness that can be debilitating or even fatal. ​
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In order for a child to be born with Spinal Muscular Atrophy, both parents must be a carrier of SMA. When both parents are a carrier, their child has a 1 in 4 chance of being affected by SMA.
