Late Disney star’s family teams with Burlington mom to bring more awareness to epilepsy – Journal Times

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BURLINGTON — After spending years advocating for epilepsy patients to have access to cannabidiol (CBD oil) for controlling seizures, a Burlington family is taking their story and epilepsy awareness nationwide, teaming with the parents of a young Disney actor who died earlier this year.

Sally and Tom Schaeffer fought alongside other Wisconsin families to pass Lydia’s Law, a state bill named after their daughter Lydia who died on May 11, 2014 at age 7 from sudden, unexpected death in epilepsy (SUDEP).

Later that month, the cannabidiol bill was signed into law. Lydia had a rare form of epilepsy, which caused her to have multiple seizures in her sleep.

Now, Sally Schaeffer is the director of the SUDEP Institute at the Epilepsy Foundation, where she is working to spread awareness and raise funds for research into epilepsy and SUDEP.

That awareness campaign is now receiving national, even international attention, thank to the parents of a young Disney Channel actor, Cameron Boyce. The Boyces have teamed up with the SUDEP Institute to raise awareness about the condition that killed their son earlier this year.

Spreading awareness

Schaeffer said epilepsy is the most underfunded condition for research in spite of it affecting 3.4 million people, which translates to roughly 1 in 26 people. Many people are unaware that seizures can result in death though 1 in 1,000 people die from SUDEP.

“I just don’t think there’s enough public knowledge about it,” said Schaeffer. “It’s amazing how many people don’t talk about their epilepsy.”

That is why she reached out to the Victor and Libby Boyce, the parents of actor Cameron Boyce who starred in Disney Channel series such as “Jessie,” “Descendants” and “Gamer’s Guide to Pretty Much Everything.” Boyce died in July 6 at the age of 20 due to a seizure in his sleep. Now, Victor and Libby Boyce have partnered with the Epilepsy Foundation to spread awareness of epilepsy and SUDEP.

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The Boyces and Schaeffer appeared on “Good Morning America” on Nov. 13, during which they played a public service announcement recorded with Boyce’s family and friends for the “K(no)w SUDEP” campaign.

“I am inspired by Boyces as they only lost their son four months ago,” said Schaeffer. “Forging ahead like this is admirable.”

The Boyces said their son had his first seizure when he was 16.

“We never felt like it would take his life,” Victor told “Good Morning America.” “We just thought it was something you have to manage.”

Since the Boyces became involved with the campaign, Schaeffer said the foundation has received press coverage from the British newspaper The Daily Mail and from “Entertainment Tonight,” “Access Hollywood” and other outlets. Because Boyce had a large youth following, Schaeffer hopes the campaign will be able to reach young people.

“That is something we want to work on is the youth living with epilepsy,” said Schaeffer. “We want them to know about SUDEP so they know how to avoid their epilepsy triggers.”

Schaeffer said that working with the Epilepsy Foundation and families like the Boyce family have helped her on her own journey after Lydia’s death.

“When you lose someone you love, especially a child, you never move on. But, with working with the Epilepsy Institute and SUDEP, it’s helped me move forward,” she said. “There is no doubt my family misses her every day but we’ve always had the mindset that we want to help other families.”

To learn more about SUDEP and see the public service announcement from Cameron Boyce’s family and friends, go online to: epilepsy.com/learn/early-death-and-sudep/sudep

“When you lose someone you love, especially a child, you never move on. But, with working with the Epilepsy Institute and SUDEP, it’s helped me move forward.” Sally Schaeffer, Burlington resident

“When you lose someone you love, especially a child, you never move on. But, with working with the Epilepsy Institute and SUDEP, it’s helped me move forward.”

Sally Schaeffer, Burlington resident

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Source: https://journaltimes.com/news/local/late-disney-star-s-family-teams-with-burlington-mom-to/article_b1fb9488-a43f-5722-928c-615522ba2d5c.html

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