Web site: www.GuardianBrain.com
Mission: To help advance neuroscience research, to provide support services and to improve the quality of life for adults and children diagnosed with injuries, tumors of the brain and Creutzfeldt-Jakob disease.
Symbol: A butterfly
Mailing address: The Guardian Brain Foundation, P.O. Box 1216, Bellmore, N.Y. 11710.
To donate: Donations can be sent to the Foundation, and made in memory or in honor of a loved on, to support the foundation or to an existing memorial fund.
To volunteer: The Guardian Brain Foundation is a non-profit, volunteer-run organization. E-mail volunteer@guardianbrain.com or visit the Web site for more information.
Support Groups: "Patients with Brain Tumors and Their Families" meets monthly at the North Bellmore Public Library. Led by neuropsychologist Dr. Paul Mattis. For information, call (516) 679-5075 or 946-0649.
To find out about other support groups or for more information, call (516) 679-5075 or visit www.GuardianBrain.com.
Out of loss comes inspiration
Volunteer-run organization gives hope to brain tumor and injury patients
By Jennifer La Lima
For Bellmorite Mary Pallotta, the healing is in the work. Pallotta awakes each morning with a mission -- to educate, nurture and protect those suffering from 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 brain cancer. In 2005, Pallotta's father, Salvatore Piti, succumbed to Creutzfeldt-Jacob disease, a rare brain disorder.
From Pallotta's heartache came the motivation to found the Guardian Brain Foundation of Bellmore.
Pallotta created the foundation in 2003. "Guardian Brain provides direct support services to patients," she said. "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."
subhead: An array of services
The foundation offers services that patients could not otherwise afford, 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 family members. Volunteers run Guardian Brain. The foundation raises funds through the annual Butterfly Ball and at the Bellmore Family Street Festival. The group sold more than 3,000 books at the 2005 fair. All proceeds benefit brain tumor or brain trauma patients.
Patients often volunteer at fund-raising 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, hallucinations and shaking that grew worse throughout the following year. He was diagnosed with Parkinson's disease, but Pallotta was dissatisfied with the diagnosis.
In a second opinion, Piti was diagnosed with Creutzfeldt-Jacob disease, a human form of mad cow disease. Doctors have not been able to tell Pallotta whether the disease was transmitted by an infected instrument used in Piti's back surgery. He died a year after his surgery.
Subhead: Making a difference
Jennifer Pulgrano, 13, of Levittown, is thankful to Pallotta. Jennifer has already undergone 11 surgeries owing to an astrocytoma brain tumor, which has left her weak on her left side. With the financial burdens of medical bills, it was difficult for her mother, Teresa, to afford additional therapies.
But through the foundation, Pallotta sponsored a full-year karate program for Jennifer. The classes helped her gain confidence, skill and strength she so badly needed. The foundation also paid for a month-long, eight-hour-per-day strength-training therapy program at St. Mary's Hospital for Children.
"No one knows what it's like unless they'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 foundation]. It shows that people can really make a difference in the lives of others. Mary has a heart of gold."
An insightful and compassionate young girl, Jennifer 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."
Bob Crescenzo of Rockville Centre is a brain tumor survivor of eight years. As a former clinical social worker, he sought 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 involved with the Guardian Brain Foundation. He met Pallotta in 1999, when she joined the group after her brother's death.
Group members 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," Crescenzo said. "It's a very comfortable place for people to express what they're going through."
Pallotta hopes to expand the foundation's reach in 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."
Comments about this story? SBrinton@liherald.com or (516) 569-4000.
