Miathon Event

The Miathon is an annual marathon distance rowing competition fundraiser in Madison, Mississippi, organized in honor of a little girl named Mia.  Every dollar raised will go directly to Gemin5.org, the patient advocacy nonprofit organization dedicated to her ultra rare disorder.  You can read more about the organization’s mission at Gemin5.org. 

A marathon. 42,195 meters. A big number with a big impact. We know, it’s a long way to row. We’ve done this on purpose. Because of her condition, Mia faces struggles most of us will never know. We can, however, make the choice to do something that challenges us to show her she is not alone, and to raise money and awareness to help families like hers fight Gemin5-related disease. 

Meet Mia

After being diagnosed with an unknown rare disorder at 18 months old, Mia’s family began to hunt for answers.  It took many years but finally in 2017 Mia’s family was identified as the 9th in the world with disease-causing variants in the GEMIN5 gene.  In 2019 Mia’s community rallied around her and the Miathon challenge was born.  Because of the generosity of so many, less than a year later Gemin5.org, the first and only nonprofit organization focused on Gemin5-related disease, was born.  Mia’s family and Gemin5.org are dedicated to learning more about this ultra rare disorder, accelerating research for treatment options and creating a community of hope for other families going through similar struggles.

Today Mia is a spunky 7-year-old who loves swimming, her cats and being silly.  While she struggles with daily activities that most of us take for granted, she has a resilient spirit and incredible determination.  Her family is so thankful for the work being done to give her the best chance for a long, fulfilling life.

Gemin5.org is a volunteer-run, registered charity, pending IRS approval of 501c3 tax exempt status.  All proceeds from the Miathon will go directly towards the organization’s mission. For more information about the event and sponsorship opportunities, please contact sarah@gemin5.org.  Thank you for supporting Mia and Gemin5.org!