We are making the miles count by Running for a Rylan. We are running to raise awareness and funds for the Dup15q Alliance and children like Rylan. The mission of the Running for Rylan program is to provide 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. Running for Rylan provides part or all of the *financial assistance towards the purchase of an item listed below.
Seizure Devices and Technology * Up to *$500
Sudden unexpected death in epilepsy (SUDEP) is a concern for many Dup15q parents whose child has seizures during the night. While no device has been proven to prevent seizure-related deaths, technology is available that can significantly lower the risk.
Adaptive Equipment: * Up to $300
Many children with Dup15q Syndrome have motor delays that require specific support and the use of adaptive equipment such as adaptive strollers, seats, walkers, & bath chairs.
GPS Tracking Devices * up to $150
80% of Children with Dup15q syndrome are diagnosed with Autism. Nearly half of children with Autism Spectrum Disorder (ASD) older than 4 years of age are reported to wander, or elope, from home. The increasing prevalence of children wandering has many parents very concerned. A GPS tracking device can give parents piece of mind and help track a child should they wander or go missing.
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. For more information visit www.dup15q.org
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Together with their families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.