AKRON, N.Y. (WIVB) – A Western New York Family is making it their mission to find a cure for epilepsy.
In November 2010, Tanya Johannes passed away.
Her death was attributed to SUDEP, Sudden Unexpected Death in Epilepsy.
Tanya’s Team was formed in her honor and memory.
Now the community is rallying behind this family to fund research.
Tammy Johannes often sits in the garden she built in her daughters memory. She said, “she was an absolutely amazing girl.”
Tanya died from what her mom calls, a “hidden illness.” Johannes said, “SUDEP, is sudden unexplained death of epilepsy.” She said most people don’t realize you can die from this disease.
It wasn’t until this past week. Governor Cuomo passed a bill making SUDEP a classification of New York State death certificates. Johannes said, “They don’t really know how many people are dying from this. It’s not labeled SUDEP. That way, it will get more research and funding when it’s on the death certificate.”
After her death, Johannes started Tanya’s Trot. It’s a 5K race that brings hundreds out to the Akron area every year. Johannes said, “We’ve raised over $100 thousand dollars in five years.”
This will be the sixth year Tanya’s Trot takes over Akron Falls Park. The event keeps Tanya’s memory alive, and helps children and adults fighting the illness.
Johannes said, “It just seems like we need to know more, to help these people with that illness.”
The event takes places on Sunday, September 24, 2017.Akron, New York
Race/Walk Start Time: 2:00pm
Raffles and Events open at 12:00pmEvent Headquarters:
Akron Falls Park
For more information on how you can join in on the event, head to the Tanya’s Trot For Epilepsy website here.