By MIKE COURSON
Great Bend Post
GREAT BEND — November is Epilepsy Awareness Month. Blake Sullivan was just 21 years old when he died of Sudden Unexpected Death in Epilepsy (SUDEP) on Oct. 18, 2018, just two weeks shy of November. Four years later, Sully's Foundation is still going strong to raise awareness and help those who suffer from epilepsy. Jack Westhoff graduated from Great Bend High School alongside Sullivan in 2015, and helped create the foundation in 2019.
"We got together after Blake's passing and decided this is a tragic event and we just didn't want to let it be in vain," he said. "Blake definitely had the spirit of helping people and spreading joy, and we wanted to find a way to do that, and help prevent people from feeling what we were feeling in that moment."
According to the Centers for Disease Control, there are approximately 1.16 SUDEP cases for every 1,000 people with epilepsy. The exact cause of SUDEP is unknown but may be attributed to breathing difficulties or cardiac arrest during a seizure. An estimated 3,000 people, mostly in their 20s or younger, die from SUDEP each year.
After Blake's death in 2018, Westhoff teamed up with fellow classmates Shade Wondra and Kiley (Heine) Wondra, along with some of Blake's Lambda Chi fraternity brothers from Kansas State University, to start the foundation. Numbers are unavailable from this year's fundraiser that wrapped up over the weekend, but Sully's Foundation raised more than $27,000 in its first two years.
Sully's Foundation has teamed up with the Denver-based Chelsea Hutchison Foundation. Hutchison was just 16 when she died from SUDEP in her sleep. Both foundations now use fundraisers to purchase movement monitors and seizure-response dogs for epilepsy patients.
"They've been around a lot longer than we have, so they've got their eye on how to source difference seizure monitors and who to talk to to get some support dogs," said Westhoff. "We've donated that money to them, and we have the freedom to direct what to spend it on."
Movement monitors alert a parent or caregiver of a seizure and allow them to administer life-saving measures if necessary. Response dogs can also be used to summons help, rouse an unconscious patient, and have even been known to alert caregivers before the onset of a seizure.
Sully's Foundation just completed its 2022 fundraiser, but there are still ways to donate. Both Great Bend Pizza Huts will donate 20 percent of sales from 4-9 p.m. on Tuesday, Nov. 15 to Sully's Foundation. Be sure to mention the promotion. The foundation also takes donations via Venmo and PayPal, with links to both on its Facebook page.
By now, the GBHS classmates have spread around the country. Other board members include Alex Peterson in Fargo, N.D.; Kyle Peterson and Noah Patterson in Kansas City, Mo.; and Jason Davis in Asheville, N.C. It makes reunions difficult, but Westhoff likes the idea of taking Blake's memory nationwide.
"My fiance and I are out here in the Pacific Northwest, we've got Shade and Kiley in the northeast," he said. "We're spread across the map, which makes it difficult to find times to meet, but it gives us an opportunity to spread our footprint going forward."