The former Caroline Caprio Scholarship and Giving Fund has officially changed their name to the Caroline Caprio Brain Tumor Foundation, though their purpose remains unchanged.

The organization changed their name and website in order to make it easier to find online and, according to Caroline Caprio, president of the foundation, because the old name was missing any references to brain tumors.

The foundation offers help for those that need to pay for MRIs, CAT scans, ultrasounds and other medical expenses, including transportation to and from appointments, as well as spiritual guidance.

Caprio, who has lived in Warwick for 16 years, is a survivor of a brain tumor herself. She was diagnosed in July of 2013, and was told that she needed emergency surgery in order to remove the meningioma that had developed. According to doctors, it had reached the size of a grapefruit.

Caprio knew something was wrong before her official diagnosis, but since her surgery was only 48 hours after her official diagnosis, she didn’t get the chance to process it much. The recovery process, though, was when what Caprio was experiencing really sunk in for her.

“It was probably October that I started to process things, and I went to a soiree hosted by my neurosurgeon,” Caprio said. “When I saw them, and I listened to testimonials, I just started crying because it hit me what could have happened to me.”

The foundation itself began in 2015, and was initially personally funded by Jayne Oliver, a personal friend of Caprio’s, for its first two years. Ten volunteers comprise the foundation, and none of them are paid.

Caprio said that that system worked well to make sure they can provide quick assistance to anyone that needs it.

“If I need something for a patient, I don’t have to wait for somebody to answer me that’s across the country,” Caprio said. “I have a small board, and we’re all close-knit. And if I need an answer, I have it the same day.”

Even when the organization was operating on a shoestring budget, Caprio said that the foundation has never turned anyone away- something that she puts a lot of pride into.

Caprio said that her experiences have helped her make connections with people that used to be in her position, and made sure that she could effectively help them as they go through treatment of their own.

“I’ll get a call from someone that’s going into surgery and they’re terrified,” Caprio said. “When they ask me questions, I remember this. I remember what it felt like. And sometimes I just sit with them. I sit with the families when they’re being operated on and I prepare the families.”

The biggest advice Caprio gives the families of those going through brain tumors is simple- get them through the process with all their love.

Throughout her tenure, Caprio estimates that she has helped approximately 60 people with their experiences with their own brain tumors. Many of that number have passed away, and Caprio said that the loss is never easy to deal with.

“I’ve lost three children under the age of four,” Caprio said. “I’ve had to say one of the eulogies, and had to see a grief counselor. I was dealing with, from what I’ve been told, survivor’s guilt. Why am I living and why are these babies dead?”

Still, helping those with terminal cancer be able to see out final wishes and spend some extra time with their loved ones is important work, Caprio said.

Rhode Island has among the highest rates of glioblastoma in the entire country, according to Lifespan. Experts do not know why this is.

The foundation is also making preparations for their annual fundraiser, which will be held on June 8 at the Quonset Officers’ Club in North Kingstown. Tickets will cost $70, and the fundraiser will include a steak dinner, silent auction and live entertainment.

Caprio said that the goal for the newly rechristened organization is to raise $40,000- enough to keep the organization’s operations running smoothly for the year.

No matter what’s raised, though, Caprio is planning on working to make sure that the Caroline Caprio Brain Tumor Foundation can help anyone who needs it.

“After you’ve had a craniotomy and a brain tumor, you don’t look into the future; you take it day by day,” Caprio said. “I live each day like I’m dying. I don’t want to stress myself. I wake up in the morning and say thank you God for another day. And I make the most out of the day.”

The Caroline Caprio Brain Tumor Foundation can be found online at tccbtf.org.