"Honored to help. 😍"
Run for a Reason and make those miles count by becoming a Running for Rylan fundraiser for the Dup15q Alliance. You will help more families affected by dup15q syndrome, and you'll help your friends feel good about doing good.
Any individual who has a Running for Rylan Fundraiser page and raises at least $30 will earn a customized Dup15q Alliance performance shirt for your race.
The Running for Rylan program is a program created by Sam Sivak, a close family friend to Nick and Naka King. Sam and Kristina Sivak are small business owners, avid runners, and parents to five wonderful children in rural Pennsylvania.
"My name is Sam Sivak. I'm a dreamer and a helper. I remember visiting the Kings in the hospital the week Rylan was born, a beautiful healthy baby with overjoyed parents. When Rylan was diagnosed with Dup15q Syndrome 3 years later, we all felt helpless. As close family friends, we wanted to help but we weren't sure how. Through the following years I was stunned to learn how much out of pocket money is spent, the frustrations with insurance companies not recognizing certain disabilities and the lag times in insurance reimbursement when they do recognize them. I also realize, to make matters even more complicated, that these families often really struggle financially due to cost associated with adaptive equipment, therapies and life saving medications.
As an avid runner, I noticed the running community everywhere I go is very outgoing, generous, caring and supportive and are usually doing races that raise money for some campaign. That is when the dream of "Running for Rylan" came together. Reaching out to our Running community to make those miles count in honor of Rylan. Creating running events that haven't been done before and raising funds to work towards a program that would 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 is working towards a program that would 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 for qualified individuals.
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.
*Upon furnished receipt
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; 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.