Clif and Arleen Read

Team Captain C2C4Charlie Gear Up for Epilepsy

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Charlie Read grew up on a bicycle. Beginning when he was two years old and then every year until age 9, he rode on the back of his dad’s bike in the family-organized “Tour de Quabbin”-- an annual 70 mile ride. 

Then, three days short of his 12th birthday, Charlie completed the entire ride on his own bike, the youngest person to ever do so in the 33 years of this event. A few weeks later when he presented his 6th grade graduation portfolio of his proudest accomplishments, he described his feeling after that ride: “I felt like I could do anything.”

Charlie had been diagnosed with epilepsy when he was an infant. There were only a few seizures that we were aware of in his lifetime and the disorder was just a side note, never stopping him from anything he wanted to do. That is, until August 15, 2016, when one last seizure took his life at age 16. SUDEP (Sudden Unexpected Death in Epilepsy) is a term we had never heard of before, but it takes the lives of an estimated 3000 young people in the US yearly and devastates their loved ones. The factors responsible for SUDEP deaths are not well understood, but probably include catastrophic cardiac, respiratory and neurologic events.

The summer of 2017 will see Charlie’s parents and a team of friends and family cross the United States on bicycles. This ride has been a dream since before Charlie’s death and he was meant to be along with us. We will feel his absence deeply. All donations to our team’s efforts will go to support the SUDEP Institute of the Epilepsy Foundation, which

  • Carries out SUDEP Education and Awareness programs for people touched by epilepsy and for medical professionals.
  • Drives and supports research into the causes of and ways to prevent SUDEP.
  • Offers a support network providing counseling, community, and resources for individuals and families affected by SUDEP.
  • Works together with many epilepsy organizations to find the answers to SUDEP and help families with epilepsy.

We hope that someday this phenomenon will be better understood and prevented.

Click here to follow along as we ride across America.

 

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