Valastro Family Raises Awareness for Epilepsy
Guests sampled mini cupcakes, bid on silent auction prizes, and listened to the "Cake Boss" family discuss epilepsy.
What’s better than sinking your teeth into a chocolatey cupcake with fresh butter cream frosting? How about doing it in the name of charity?
At Cupcakes with Buddy: Supporting Epilepsy Awareness, organized by the Anita Kaufmann Foundation, guests sampled thirteen bakeries’ worth of mini, purple cupcakes and bid on silent auction prizes on Sunday afternoon. All proceeds went toward educational programs, materials, and seizure first aid trainings.
While the purple-clad crowd eagerly awaited the arrival of Hoboken’s biggest celebrities, Cake Boss’ Buddy Valastro and family, they were able to peruse the offerings of some of the tri-state area’s finest cupcake bakeries, gathered in Hoboken’s W Hotel.
The selections were sinfully divine, with such flavors as Gigi’s Cupcakes’ signature Red Velvet with cream cheese frosting, or Tonnie’s Minis’ Strawberry Twist flavor, a swirl of strawberry and sponge with strawberry and butter cream icing. But Marla Acosta, head decorator at Tonnie’s Minis, would contend that since it’s for a good cause, guests can feel happy about eating these otherwise guilt-inducing cupcakes.
Amidst the colorful array of iced treats, the Anita Kaufmann Foundation had stationed a booth where guests could make donations, pick up reading material, and meet with “Mighty Mike” Simmel, professional entertainment basketball player of the Harlem Wizards.
Simmel, who suffers from epilepsy, incorporates his message of creating awareness with his basketball act while visiting 6th graders in schools around New Jersey. He hopes that events like Sunday’s will foster more attention for the cause and lead to advancements in medicine.
“I think this is important because there’s a stigma surrounding epilepsy, and I think that events like this help bring epilepsy more out in the fore front and help erase that stigma,” he said.
With raising awareness at the core of the Anita Kaufmann Foundation’s mission, the organization works to dispel the myths associated with epilepsy and to educate the public about the condition. Featuring the “Cake Boss” family as Sunday’s headliner was a boon for event organizers.
But the issue is one close to the Valastro family's heart.
Bartolina Faugno, Buddy's niece and 14-year old daughter of Grace and Joey Faugno, was diagnosed with infantile spasms and a brain tumor at 6 months old. She has spent much of her life experimenting with numerous seizure medications and medical procedures. She eventually had 15 percent of her brain removed because of her illnesses.
“When I was having seizures, I always felt scared,” Bartolina Faugno said. “But I didn’t know that was part of my seizures. I would sometimes feel confused, and I did not know how to put my words into a sentence. It made me feel horrible, overwhelmed, disappointed, and frustrated.”
Bartolina Faugno struggled after her surgery, finding it difficult to learn in school. But it was the support of her family and friends that helped her through, especially, she said, their patience, encouragement, and willingness to understand her illness.
These days, Bartolina Faugno is seizure free, and has been for almost 3 years. She has not taken any medication in eight months, and she enjoys her time as a freshman in high school, participating in her school’s softball team.
Her struggles, however, are still fresh in her family’s mind, making epilepsy awareness a vital issue for the family.
“We always spoke about epilepsy, to anyone and everyone that would listen, just for the fact that you never know if there’s more information, a new medication, a different story to know that you’re not out there alone,” said Grace Faugno. “My mouth was never shut, and we taught Bartolina that, yes, she has epilepsy, but it’s nothing to be ashamed of.”
Too many people don’t know what a seizure is, Grace Faugno said. She advocates public awareness of the different kinds of seizures that exist, as well as understanding that seizures are not a behavioral issue, but rather a neurological one. “A seizure can be anything,” she said. “A seizure could be a laugh. A seizure could be a stomach ache. A seizure could be a smell. It could be a crooked smile, tearing in the eyes.”
Joey Faugno does not consider epilepsy to be a mainstream illness, which he said leads to lowered levels of care and false stigmas about those afflicted with epilepsy. “If someone has a heart attack, 9 out of 10 people are going to drop down and start CPR because they’ve seen it somewhere else,” he said. “If someone has a seizure, 9 out of 10 people are going to run away.”
He said he believes the course of treatment in America needs to be changed. He said it is insane that his family had to order their medication from London and Canada. “You shouldn’t have to go out of the country to get your medication. This is America.”
Uma Tanjea, a pediatrician from Wykoff, brought her family to see the “Cake Boss” family on Sunday. She said they came away Sunday with a greater sense of awareness about the issues facing those struggling with epilepsy.
“They’re right. A lot of people don’t know what epilepsy is and what to do for someone who is having a seizure right in front of you," Tanjea said, "and I think for my children to hear that is great."