The 2023 annual virtual 5K benefiting the Malan Syndrome Foundation raised $82,000 for Malan syndrome research. There were 700 donors and 194 participants around the world that contributed to the success of this campaign.
This year's goal is $100,000! Support Team Awesome Austin this year as we "roll" our 5K in our superpowered jogging stroller to support research that will improve the understanding of Malan syndrome and accelerate treatment for our son and everyone who suffers with this disease.
What is Malan syndrome?
Malan syndrome is a rare, genetic neurodevelopmental disorder caused by a mutation in the NFIX gene on chromosome 19. The NFIX gene is a protein-coding gene that plays an essential role in brain and musculoskeletal development. Currently, there are only around 200 people in the world diagnosed with Malan syndrome. However, it is estimated that thousands of people with the disorder remain undiagnosed.