My sister, Amy, and I are at it again! This time we are doubling down on a previous challenge for this year’s: 2 Row, 2 Run, 2 Climb 2 Support The Olivia Joan Foundation!
On January 17, 2023, Olivia was diagnosed with the ultra-rare genetic disorder called GNAO1. The visions and plans of her family changed that day, and life as they knew it was going to look a lot different. With the disorder only being discovered in 2013, the diagnosis came with many unknowns, countless questions, emotional pain, and an incredible amount of fear.
Most patients with a GNAO1 neurodevelopmental disorder are diagnosed as infants or young children. Many begin experiencing seizures, abnormal movements, and developmental delays in their infancy. Most GNAO1 patients are non-verbal and wheelchair dependent. Some of the patients have intellectual disabilities, but many possess higher cognitive function than may be initially appreciated. There is no known treatment or cure for GNAO1 and attempts to manage symptoms often involve numerous medications.
In early 2024, Olivia’s family created The Olivia Joan Foundation - a fully incorporated 501(c)(3) Non-Profit, with the goals of funding GNAO1 research, providing scholarships to both neurotypical and neurodivergent students, and raising awareness about GNAO1.
On Tuesday, June 4, Amy and I will start the day by climbing up every stair in all 37 sections of Harvard Stadium. From there, we will run 10K, complete a 20k erg row, and run another 10K before making a final round of the Harvard Stadium steps, all to support Olivia and her foundation! It will be a challenge for us in the summer heat, but nothing compared to the challenges Olivia, her family, and all those coping with GNAO1 face and overcome every day!
Thanks to the generosity of many, we met the goals for our past two challenges, and we would love to meet or beat our goal this year! Please consider supporting our efforts by making a donation. Any amount is appreciated. If you would like to learn more about The Olivia Joan Foundation please visit the website.
guidestar.org/profile/99-1503867