A Bronx family-run nonprofit is drawing awareness to a serious health condition with a musical performance that will include an informational component.
Seize the Cure 4 Epilepsy Awareness, a Soundview-based nonprofit dedicated to epilepsy awareness, will host its third concert and forum at the Bronx YMCA on Sunday, November 4 at 2 p.m.
Tara Gibson founded the organization after her son Tariq Fenelon was diagnosed with severe refractory epilepsy, a form of the disorder which comes on suddenly and doesn’t have indicators for seizure prediction, she told the Bronx Times.
At the onset of her son’s diagnosis, Gibson said she was surprised by both the intensity of the seizures and the difficulties involved in getting information and support concerning the condition.
After connecting with organizations like the Epilepsy Foundation – a national nonprofit dedicated to the well being of people with seizure disorders and epilepsy — she began using her talents as a musician and those of her friends to hold performances that doubled as informational sessions.
Through the process of hosting the forums in her community and in planning the upcoming event, which takes place at 2 Castle Hill Avenue, she was able to connect with people and organizations that can help, and has sought to help others.
“I wanted to help other parents and give them a greater level of education about what is available in terms of support,” said Gibson.
The Bronx YMCA event will feature music DJ Kool Kgee who is donating his time, live entertainment, spoken word poetry, raffles, refreshments, merchandise raising awareness and informational vendors, said Gibson.
There will also be medical professionals speaking about epilepsy and information from the Epilepsy Foundation and other support sources, said Gibson.
The fun and informative event is supported by local elected officials such as Senator Luis Sepulveda, the NYS Office of People with Developmental Disabilities, New York Presbyterian Weill Cornell Medical Center, the Bronx YMCA, locally-based peace organization Peace December, NYC Safe Sleep Initiative, Harris Hands Community Services, Maria Williams from New York Life, Down Twins Water 2 Kids and more, according to the organization.
“We have guest speakers including specialists that deal with the illness, as well as parents that have children with epilepsy, or people with epilepsy,“ said Ronald Bullock, an organization board member.
Tariq’s diagnosis about two years ago was life altering, leading to a situation that is often difficult to cope with for both mother and son, said Gibson.
Gibson said she compelled to action after seeing all the effects that epilepsy was having on her 16-year-old son’s development including not only physically, but also cognatively, psychologically and emotionally.
Gibson said that her son’s seizures occur often and last from two to four minutes.
“I cannot let him go to the store or go over to a friends’ houses like other 16-year-olds,” his mom said. “There always has to be somebody with him that knows how to handle a seizure.”
She added: “This is a trial and error situation…and there are no specific triggers to the seizures or a pattern.”
Among the planned guest speakers are Chilton Harper of the Epilepsy Foundation; Dr. Pegah Afra, Weill Cornell Medical Center interim assistant professor in the Department of Neurology and social worker assistant Jacqueline Parkinson.
For more information visit: www.seize