I donated in support of this campaign.
Anyone who knows me, knows I am not an athlete. There is nothing about running that I enjoy. For the past 4 years our friends have come together to do the Tough Mudder obstacle course as a fundraiser and to raise awareness for Dup15q Syndrome. Each year, I jog about 25% and walk the rest. It is hard but we have a wonderful team that supports each through the race.
This year pushing myself the same way I push Rylan through her therapy. I want to make the miles count as I Run for Rylan. As I strive to make a difference in something bigger than me.
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. This idea came from our dear family friend Sam Sivak. To learn more or become a fundraiser visit www.dup15q.org/run
Just a small donation will go a long way to helping me meet my goal for the Dup15q Alliance and children like Rylan.
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; fine motor, cognitive, speech and language, developmental, behavioral, and sensory processing delays; rarely there is differences in the way their hearts, kidneys, or other body organs are formed. There are 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.