Fundraiser aids woman’s fight against rare brain abnormality

Fundraiser aids woman’s fight against rare brain abnormality
Photo courtesy of Julie Nuccio

A Bronx woman diagnosed with a rare brain abnormality is hoping to raise awareness of this medical condition at an upcoming fundraiser.

The AVM Awareness and Support Julie Event is set for Wednesday, September 30 from 7 to 10 p.m. at Jerome’s Rivington F+B at 155 Rivington Street, Manhattan, to start AVM Awareness Month in October.

This fundraiser will support Julie Nuccio, 31, who was diagnosed with a cranial arteriovenous malformation on July 28, the day before her 31st birthday.

A lifelong Pelham Bay resident, Nuccio said she began experiencing symptoms in early July when she would fall asleep watching television, eating dinner or working on the computer.

An MRI revealed these sleeping spells were actually ‘ambient seizures’ caused by AVM.

AVM refers to a ‘tangle’ of abnormal arteries and veins which bypass the capillary system.

While many AVMs produce no noticeable symptoms, they cause intense pain or bleeding or can lead to serious medical issues such as neurological issues, seizures, aneurysms and strokes, Nuccio explained.

Hosted by Nuccio’s sister, Jennifer, the event will raise awareness and help fund some of her sister’s future treatments which may not be covered by insurance.

Tickets for this fundraiser are $25 and include door prize raffle tickets, light snacks, cash bar and music.

Raffle and auction items include an autographed drum head from former Guns N’ Roses and Velvet Revolver drummer, Matt Sorum; items signed by the ‘Godmother of Punk’ Joan Jett; a Epiphone acoustic guitar signed by the grunge band, Candlebox and an ABCs ‘Castle’ script signed by the show’s cast among others.

To purchase tickets in advance, visit www.joeniekrofoundation.com/events/avm-awareness/.

All ticket donations and raffle money will cover Nuccio’s medical expenses in addition to raising funds for the Joe Niekro Foundation which endorsed this event.

Formed in 2008, the Scottsdale, Arizona foundation was created by Natalie Niekro after her father, Joe, a 22-year professional baseball veteran died from a cerebral brain aneurysm in October 2006.

It supports patients and families, research, treatment and awareness of brain aneurysms, AVMs and hemorrhagic strokes.

“People who will attend this event are there to support Julie and really understand what she is going through,” said Niekro. “Our foundation will be providing educational reading materials during the event to help raise awareness on this very rare condition.”

Dr. Allan Brook, professor of radiology and neurosurgery at Albert Einstein College of Medicine and Montefiore’s interventional neuroradiology director, said that Montefiore has treated hundreds of AVMs and added that the newest published reports explain that less than one percent of the population has this condition.

“High end imaging technology like MRIs are very helpful in capturing AVMs in its early stages and patients can receive treatment from a multidisciplinary team of neurosurgeons, interventional neuroradiologists and radiation oncologists to determine the best course of treatment,” he said.

Nuccio is undergoing treatment at New York Presbyterian/Weill Cornell Medical Center.

Nuccio said, her AVM is located on the left side of her brain’s “high real estate area” affecting her right side motor skills.

She is scheduled to have another angiogram performed on Tuesday, October 6.

If unable to attend, but wish to donate to this worthy cause, visit www.gofundme.com/getjuliebetter.