Inspired by her own personal experiences, Alyssa Carfi founded the Brave Minds Project, a nonprofit program intended to provide support systems, form a community and raise awareness for those diagnosed with brain and brain stem conditions.
This June marks Carfi’s 10-year anniversary of her own brainstem surgery. When she was 15, doctors discovered that she had a cavernoma, also known as a cavernous malformation.
To describe it in more understandable detail, a cavernoma is a bunch of little blood vessels that resemble grapes lodged in the brain stem. Because it had contact with Carfi’s sixth and seventh cranial nerves, every time it bled, it would cause some kind of distortion in Carfi’s eye and smile. This was first noticed when Carfi found it difficult to smile at age 12. After her parents initially dismissed it as tiredness, they brought her to the emergency room to have it checked out. It was originally determined to be Bell’s Palsy and Carfi was given a steroid. Within weeks, she was back to normal and it was just written off as stress due to the then recent Sept. 11, 2001 tragedy.
However, when Carfi was a freshman in high school, it returned, evidenced by the right side of her face looking a bit off. After another trip to the emergency room, it was again diagnosed as Bell’s Palsy. That night, her pediatrician Dr. Barry Weissman of Bergen Pediatrics called and asked her father various questions about her functioning capabilities. He then told them to come into his office the following morning. When they did, he revealed some new information to them.
“He was like, ‘They misdiagnosed you. We need to get you back to the emergency room. You need an MRI, a catscan, the works,’” said Carfi.
After some tests back in the emergency room at Hackensack Hospital, Dr. Arno Fried greeted Carfi and her family and explained everything about her cavernoma to them, granting Carfi the ability to ask questions and learn more about her body. Because Carfi bounced back after the two times it bled, Dr. Fried did not see the need to remove it at the time and Carfi went on with life.
One day at track practice, Carfi, now a high school senior, felt so tired that she felt like she was not running, but this too was attributed to stress, this time about the upcoming prom and preparing for college. However, when she went home to take a nap, she woke up with her eye turned toward her nose.
This was when it was decided that something further needed to be done. In the interim, Carfi was able to finish school and attend prom because nothing had changed further. Three days following her high school graduation, at the age of 18, she had surgery done on her brainstem (and eventually over 11 cosmetic surgeries thereafter).
“I had to defer college for a semester to recover because I had to essentially learn how to walk again and get strong again,” explained Carfi.
She attended college at the Fashion Institute of Technology and even studied abroad in London and Shanghai. She also graduated on time, despite having started college a semester late.
“I think that when you’re told that you can’t do something, it makes you want to do it even more. Being that I had to defer college for a semester, it made me ultimately a better student because I wanted it so badly,” she said.
To commemorate her 10-year anniversary, she founded the Brave Minds Project, which places a special focus on those aged 10 through 29.
“Those are some of the most critical years of your life,” Carfi explained. “Those very well could have been the years that shaped who you are today, and so what I wanted to do was to help the patients, and not only help the patients, to help their families.”
Something that Carfi wants do through Brave Minds Project is to supply age appropriate care packages for the teenage and adult patients. Another is to create a mentorship program.
“This mentorship program will help these patients to navigate through these times, through helping them educationally and professionally. Again, ages 10 to 29 is when you’re figuring out who you are and what you want to be in life. If someone wants to be a teacher or a doctor or a musician, I would like to find people who are excelling in those areas and bring them to our patients. So far we have been really successful. Just with social media alone we have connected with so many people not only in America but around the world who have found us,” she said.
Brave Minds Project held its very first brunch event on April 7 at The Shepherd & The Knucklehead in Hoboken. There they honored one of Dr. Fried’s patients Victoria Caetano, a high school senior with spina bifida aspiring to be a doctor, as a way to celebrate her bravery as a nice sendoff before her surgery on April 15.
“I had asked Dr. Fried to find a few patients who were within our age group. I really wanted to focus on someone who was in high school and was going through some of the things that I was going through,” said Carfi.
Dr. Fried’s team recommended Caetano based on her similarities to Carfi.
“‘We have this one patient and she reminds me a lot of you,’” said Carfi, quoting Dr. Fried’s team, “‘She is outgoing and spunky. She’s had all of these medical hurdles, but they’re never a setback for her. She just deals with it and overcomes it and she would be a great person.’ Just within 20 minutes of talking with her and her mom, I was like, ‘Oh. She’s it. This is the girl we are definitely honoring for our first time.’”
Mr. Cupcakes provided cupcakes for the event and the band Running Lights performed. Also in attendance were Dr. Max Gomez of CBS New York and Iliana Rodriguez and Teri Gabay from Advanced Neurosurgery Associates.
“Iliana and Teri are a huge help with Brave Minds Project. They were always there for my family and I, and still continue to be,” said Carfi.
The event raised over $5,000 and Brave Minds Project is now accepting donations for their #CourageKits project.
“As we forge ahead to create an inclusive community, these funds bring us one step closer to developing programs that will help patients and their families. Including our #CourageKits, a personalized box for each patient and sibling in need of some courage and happiness. If after a large procedure or surgery, Brave Minds Project will put special items together to brighten their day,” she said.
Brave Minds Project held their next event, a shopping night out on May 2, 2019, at Katie Diamond Jewelry. This night honored one of Brave Minds Project’s #BraveMamas, mother of three Suzanne Donadio with Luminous doing her makeup. Donadio’s 13-year-old daughter was diagnosed with hydrocephalus and epilepsy and Donadio “is determined to give her three daughters the best life possible, while helping others along the way.” Katie Diamond Jewelry donated 15 percent of both online and in store sales to Brave Minds Project.
To commemorate her 10-year anniversary since her surgery, Carfi participated in Sky Dive For the Brave (https://skydiveforthebrave.splashthat.com) to raise money for Brave Minds Project by jumping out of a plane at Sussex Skydive on June 27. Joining her was Remi Adeleke, “Transformers: The Last Knight” actor, author of “Transformed: A Navy SEAL’s Unlikely Journey from the Throne of Africa, to the Streets of the Bronx, to Defying All Odds” and a Navy SEAL veteran.
To learn more about the Brave Minds Project, visit www.bravemindsproject.org.
By Stefanie Sears