I donated in support of this campaign.
The 2019 Running for Rylan - Tough Mudder team is taking on 10 miles of Tough Mudder for something bigger than themselves. To make each mile count and make a difference in the lives of kids like Rylan.
We run for those who can't. We run to raise awareness for rare genetic disorder. We run to raise funds for the mission of the Running for Rylan is working towards providing financial assistance to families affected by dup15q syndrome for safety equipment that is not covered by insurance. Specifically Seizure Monitors, Adaptive Equipment and GPS trackers.
Just a small donation will go a long way to helping us meet our goal for the Dup15q Alliance and children like Rylan.
2019 Tough Mudder Team
Nick and Naka King
Micheal and Natalie Anderson
Matt and Courtney Smithers
Caleb Dilley and Jenna Zacherl
Dup15q Syndrome is a rare genetic disorder which results from duplications of chromosome 15q11.2-13.1. It's a random disorder that is unrelated to environmental or lifestyle factors. Those with Dup15q may exhibit some, all, or only a few of the potential components of the disorder, which include: hypotonia (poor muscle tone); facial features such as flat nasal bridges or deep-set eyes, high palates, and sometimes differences in skin pigmentation; inhibited growth or small stature; differences in heart, liver, or kidney formation; fine motor, cognitive, speech and language, developmental, behavioral, and sensory processing delays; and higher rates of diagnosis on the autism spectrum. Attention deficit, anxiety, and seizure disorders are also more common with Dup15q.
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome.