Not all three of the Pezzillo brothers have hemophilia, but they stand united in raising awareness about the chronic condition that can cost hundreds of thousands per year per patient to treat and manage.
Consider last week, when Anthony Pezzillo, who runs Mastery Martial Arts Academy in Johnston; Michael Pezzillo, who runs another Mastery Martial Arts Academy in East Greernwich and Rich Pezzillo, communications director for the Hemophilia Federation of America, teamed up to raise money and awareness at all six of the martial arts studios in Rhode Island.
Students and guests paid $5 for a board and later, each board was broken. They called it a board breaking event and it coincided with March being Hemophilia Awareness Month.
“We wanted to raise awareness, educate people and raise funds,” Rich Pezzillo said.
It was a chance to not only excite students with some skilled martial arts moves and broken boards, but also put a human face on the condition.
Rich and Anthony both have hemophilia. Michael does not, but “we wanted to come together as brothers to raise awareness for an important cause,” Pezzillo said. “I’m really fortunate to have two amazing brothers who agreed to help out with the cause in Rhode Island.”
Hemophilia is a rare condition, affecting about 20,000 people in the United States and less than 200 in Rhode Island, Pezzillo said.
Most people don’t realize that hemophiliacs treat themselves with an IV, which requires tightening a tourniquet and finding a vein.
And the treatment, known as clotting factor, can cost anywhere from $250,000 to $500,000 annually per patient. With a small community of hemophiliacs and such large treatment costs, the need for advocacy and fundraising is immense.
That’s why the Hemophilia Federation of America’s work, along with the work of local organizations that do outreach and clinical support is valued so highly by hemophiliacs and their families.
The federation has specific support programs for every member of the family: moms, dads, brothers and sisters. Recently, the dads in New England met up for an ice fishing trip in New Hampshire.
“We take the entire family dynamic,” Pezzillo said. "A bleeding disorder affects the entire family. HFA's programs and services were created to help."
In recent years, the rise of social media as a tool to connect people has dramatically changed the community around hemophilia. It makes sufferers feel less alone and people spread sparsely through a region don’t have to look far to find someone to turn to for help or support.
Consider a young family who just get a diagnosis for their six-month-old baby.
“You have a six-month-old and you’re giving them injections every other day, it can be traumatizing,” Pezzillo said. “You have young parents having to stick a needle into their child, finding a vein or taking them to the hospital. It’s a completely different lifestyle and support is absolutely critical.”
The community was decimated in the 1980s due to the AIDS epidemic and problems with the blood supply due to poor or nonexistent screening for infections and diseases. Along with AIDS, hepatitis C killed thousands of hemophiliacs.
The chronic condition has no cure, but with treatment and support, people are living full and complete lives.
“We may be small in numbers, but we’re big in heart,” Pezzillo said, noting they hope to make the board breaking fundraiser an annual event.
Here are some links for more information about hemophilia: http://www.hemophiliafed.org/bleeding-disorders/hemophilia/
About Hemophilia Federation of America: http://www.hemophiliafed.org/about-hfa/what-is-hfa/
About Mastery Martial Arts: https://www.masteryma.com/