One man, infinite impact

Matt Bellina, an advocate for the Right to Try Act, was honored at his Bucks County home

By Samantha Bambino

The Times

Making a difference: Loved ones, neighbors and local officials came together to honor Matt Bellina at his Holland home. The ceremony recognized him not only as a Navy veteran, but a fierce advocate of the ALS community. Source: Pete Palestina

It was the heart of summer’s most excruciating heat wave. As the sun blazed down, the temperature peaking in the the mid-90s, hardly a soul could be found on the sizzling streets … aside from the dozens gathered outside one particular home along Heron Road.

This was the residence of Holland’s Matt Bellina, and his lawn-full of guests were loved ones, neighbors and local officials who braved the suffocating heat for a special flagpole and flag dedication. The ceremony, which took place on the evening of July 2, not only honored Bellina as a Navy veteran, but a fierce advocate for those diagnosed with ALS, which he has been battling since 2014.

Bellina is locally known as a loving husband and father of three, but over the past year, he has become nationally recognized as one of the powerful forces behind the Right to Try Act — bipartisan legislation that would grant patients with terminal illnesses access to potentially life-saving treatments. On May 30, after personally meeting with Bellina, President Trump signed the Trickett Wendler, Frank Mongiello, Jordan McLinn and Matthew Bellina Right to Try Act (S. 204) into law.

While this doesn’t undo the FDA approval process, it does provide a potential lifeline for those who cannot wait. The FDA has a program that allows terminal patients to apply for early access to a promising treatment, but the application process is complicated, time-consuming and expensive, with only about 1,200 people approved each year.

“This bill that Matt championed gives patients a new pathway to potentially life-saving treatments,” said Congressman Brian Fitzpatrick, who was in attendance at the ceremony. “There is no question that piece of legislation would not have been signed into law without Matt Bellina.”

Fitzpatrick, who was present at the White House during the momentous occasion of the bill signing, shared a few words about Bellina and the strength he has exuded since his ALS diagnosis at the age of 30.

Bellina graduated from Virginia Tech in 2005, receiving commission in the U.S. Navy as a naval aviator. Though his symptoms, which included cramping hands, twitching arms and leg stiffness, eventually grounded him from flying, he continued to serve the Navy in an administrative capacity. In 2014, he medically retired with a rank of lieutenant commander, and moved back to Bucks County to be surrounded by friends and family.

“Although this disease stopped Matt’s career in its tracks, he persisted and actively involved himself in the ALS community,” Fitzpatrick said.

While ALS is one of the most debilitating diseases, attacking nerve cells in the brain and spinal cord and causing the person to lose control of their muscles, Fitzpatrick explained how Bellina rarely had a bad day, and never once felt sorry for himself.

“Anytime we think we have it tough, look at Matt and look at the positive attitude he exudes every day,” he said. “The highest compliment you can pay to someone is to say they’re a good person, a good human being with a huge heart and a compassionate soul, and that’s what Matt is.”

Sharing a similar sentiment was Jim Worthington, owner of the Newtown Athletic Club, who joined the Right to Try fight early on. When Bellina became a member of the NAC three years ago, he inquired about any fundraising initiatives for ALS. He was directed to Linda Mitchell, the NAC’s director of public and government relations and interim executive director of its charitable Have a Heart Foundation. Mitchell and Worthington were immediately on board with Bellina’s cause, quickly refocusing the NAC’s fundraising efforts on ALS in what it called “Matt’s Mission.”

On an annual basis, the NAC had been raising an average of $100,000 through the foundation. Once Bellina got involved, that amount skyrocketed to more than $500,000. In addition to fundraising, Worthington wanted to assist Bellina, who was told he only had 3–5 years to live, in his quest to have the Right to Try Act passed. Soon enough, they found themselves in Washington, D.C., speaking in front of Congress and President Trump.

“It was the first time the president of the United States heard the phrase ‘Right to Try,’” Worthington said.

Bellina spent nearly 25 minutes educating the president on the disease and what the passage of the act could mean for the ALS community. Clearly, his story made an impact.

“Ninety percent of us here today are going to die from probably a disease that at some point, you would see your doctor and they would say ‘go home and get your affairs in order.’ Think about it,” Worthington said.

Up until May 30, most would’ve thrown in the towel after receiving such news.

“You can actually go ask your physician, what can I do to prolong or save my life?” he said, choking back tears. “It’s amazing to think that as an American you didn’t have that right until a month ago.”

Attendees at the ceremony also heard from Victoria Bliss-Calkins and Tom Calkins, the husband-wife duo who purchased the flags for Bellina’s home. The two first met Bellina at their Langhorne-based Oxygen Oasis, a Hyperbaric Oxygen Therapy treatment facility, and were touched by his story. They knew they wanted to do something special for him, so they contacted Paul Hoffecker, founder of the nonprofit Flag Campaign, which honors U.S. veterans and service members with an American flag and flagpole at their residence.

“We’re in your corner for the long haul,” Calkins told Bellina, presenting him with a flag that had been flown over the Capitol and brought to the ceremony by Fitzpatrick on behalf of Congress.

As the newly erected flagpole stretched toward the sky, bearing a United States flag and Navy flag raised by local veterans, Marine Corps League Patriot Detachment member and host of the ceremony Pete Palestina passed the microphone to Bellina. Surrounded by loved ones in his wheelchair perfectly positioned on the sidewalk, he beamed with pride.

“The community came together after work, in the heat, standing in my front yard…,” he said trailing off, at a loss for words. “I’ll never be able to thank this community enough for what it’s done for me and my family. But I’ll think about it everytime I look at that flag.” ••

Samantha Bambino can be reached at sbambino@newspapermediagroup.com