Volunteer-run organization gives hope to brain tumor and injury patients
by Jennifer La Lima, East Meadow Herald, March 9, 2006
For Mary Pallotta of Bellmore, the healing is in the work. Pallotta wakes up every morning with a mission – to educate, nurture and protect those who live with brain tumors or injuries, and their families.
Pallotta has lost eight family members to disease. Her brother, Dennis Piti, died in 1999 after a three-month battle with glioblastoma, a form of brain cancer. In 2005, Pallotta’s father, Salvatore Piti, succumbed to Creutzfeldt-Jakob disease, a rare disease of the brain. From her heartache came motivation – motivation to create the Guardian Brain Foundation of Bellmore.
Pallotta founded the organization in 2003. “Guardian Brain provides direct support services to patients,” she explained. “I started the foundation in memory of my brother, but I was later inspired by the death of my father. I know what it feels like to have the world ripped from under your feet. I wanted to help other families, as someone who could understand what they were going through. The best gift you can give to the world is to touch someone else’s life.”
The foundation offers services to patients that could not be afforded otherwise, works to extend health-care support for patients who are in danger of losing assistance, provides medical resources, and offers support groups for patients and their families. Guardian Brain is run solely by volunteers. Fund-raising events, which are held throughout the year, include an annual Butterfly Ball and the Bellmore Street Fair. The 2005 Street Fair sold more than 3,000 books. All proceeds benefit brain tumor or brain trauma patients.
The patients themselves are often the volunteers at such events. “The fund-raisers are an opportunity for patients to have a voice,” Pallotta said. “It gives them a chance to tell their story, and to educate others.”
Pallotta encourages people to pay attention to their bodies and to speak up to their doctors if something seems wrong. In 2004, her father had back surgery He awoke from the surgery with symptoms of confusion, hallucination and shaking that would only increase throughout the following year. He was diagnosed with Parkinson’s disease, but Pallotta was not satisfied with the diagnosis. In a second opinion, Piti was diagnosed with Creutzfeldt-Jakob, a variant human form of mad cow disease. Doctors have not been able to tell Pallotta whether or not the disease was transmitted through an infected instrument used in Piti’s back surgery. Pitt died a year to the day after his surgery.
Jennifer Pulgrano, 13, of Levittown, is thankful for Pallotta. In her young life, Jennifer has undergone 11 surgeries due to an astrocytoma brain tumor. The tumor makes Pulgrano very weak on her left side. With the financial burdens of medical bills, it was difficult for her mother; Teresa, to afford additional therapies. Through the fund-raising efforts of the foundation, Pallotta sponsored a full-year karate program for Jennifer. The classes gave her an opportunity to gain confidence. skill and strength that she so needed at the time. The foundation also paid for a month-long, eight-hourper-day strength-training therapy program at St. Mary’s Hospital for Children.
“No one knows what it’s like unless hey’ve been there themselves,” said Teresa Pulgrano. “It can be so difficult emotionally and financially. There was nowhere to turn for a long time. I had made tons of calls and done so much research, all on my own. But now, there’s nothing that can compare [to The Guardian Brain Foundation]. It shows that people can really make a difference in the lives of others. Mary has a heart of gold.”
An insightful anti compassionate young girl, Jennifer Pulgrano is well aware of how Pallotta has dedicated so much of her energy to helping others. Jennifer hopes to do the same in her life. “Mary is really fun,” she said. “I love her. When I grow up, I want to be a special [education] teacher. so I can help kids.” Jennifer took part in the foundation’s annual Butterfly Ball, which is held every winter as a fund-raiser for the foundation.
Bob Crescenzo of Rockville Center is a brain tumor survivor of eight years. As a former clinical social worker, he sought out a support group soon after he underwent surgery to remove a non-malignant tumor at the back Of his brain: He is now the facilitator of the group at the Plainview/Old Bethpage Library, and is actively involved with Pallotta and the Guardian Brain Foundation. The two met in 1999 when Pallotta joined the group for support after her brother’s death.
Crescenzo believes strongly in the emotional benefits of a support group. Members of the groups are at different stages of their diagnoses. “It can be very difficult to deal with the emotional and physical adjustments that affect people who’ve experienced a brain tumor.” he said. “It’s a very comfortable place for people to express what. they are going through.”
Pallotta hopes to expand the abilities of the foundation hi the future, including providing more support groups for patients and family members. “I feel compelled to be the voice of my brother and father” she said. “That’s why my passion is strong and I work so hard. I always wanted to make a difference with my life. And now. with Guardian Brain, I feel like my brother and I are in business together”