Cruising for a Cause: Melrose-Based FA Project Announces Fundraising Partnership with Boston’s Best Cruises

The FA Project, a Melrose-based non-profit that supports those living with the debilitating disease Freidreich’s Ataxia, has partnered with Boston’s Best Cruises to raise funds for the cause. The company has pledged to donate a portion of its Harbor Cruise and Sunset Cruise ticket sales to the organization.

According to the FA Project’s website, “The Harbor Cruise is a brief voyage out on the water that provides those aboard with rich history and mythology about the Harbor and the city of Boston. Departing on the hour behind the Marriott Long Wharf Hotel, the Harbor cruise gives passengers spectacular views of Boston. The Sunset Cruise sets sail in the evening, providing food and drinks along with plenty of deck space to view the city and its surroundings.”

The fundraiser will run through the summer, culminating in a fundraising cruise aboard the cruise line’s largest vessel, Voyager III.  That event is yet to be scheduled.

A Debilitating Disease

Friedreich’s Ataxia is a rare, neurodegenerative disease affecting 1 in every 50,000 Americans. The disease, which falls under the umbrella of muscular dystrophy, can manifest if individuals inherit a copy of a defective gene (located on chromosome 9) from both parents.

FA is a chronic condition that progresses slowly throughout an individual’s lifetime.   Typically diagnosed between the ages of 5 and 15, FA causes the nervous system to deteriorate, leading to difficulty controlling muscle movement and, potentially, other serious complications such as scoliosis and heart disease. Within 10 to 20 years of the first appearance of symptoms, sufferers generally require wheelchairs for mobility.

Like many chronic medical conditions, FA can also come with financial side-effects. Those living with the condition are often saddled with the cost of medical visits, medical devices, and assisted care. The FA Project was started to improve the quality of life of those affected by FA, largely by providing them with assistance to offset the financial burden brought on by the disease.

One Couple’s Cause

The FA Project was founded by Melrose residents Richie and Maria Currier. Richie was diagnosed with FA in 1998, and has been wheelchair-bound since 2004. Their eyes were opened to the need for an organization like The FA Project when they attended their first Freidreich’s Ataxia Symposium at Children’s Hospital in Philadelphia in 2008.

“The symposium attracts a lot of people who have been diagnosed recently,” Maria explained, “and it’s really overwhelming, even for people who have been diagnosed as long as Richie was. It was really our first time meeting anybody else with FA.”

Though FA is the most common form of inherited ataxia, it’s still rare. Interaction with others suffering from the same disorder can be infrequent. After learning more about FA, and after meeting others with the disease, the couple thought about how fortunate they were despite the challenges posed by Richie’s illness.

“We thought, we know so much about this disease, and we’re in a good situation where we both work full-time,” Richie said. “All these families that we’re now connected with we know need help, and so we started The FA Project.”

The Curriers and a group of their friends established the organization to raise awareness about Friedreich’s Ataxia and to provide support in the form of travel grants, medical equipment, and other assistance. The travel grants fund trips to the Friedreich’s Ataxia Symposium, where those afflicted with FA and their families can learn more about the disease, current research, and possible treatments.

“A lot of the organizations that are dedicated to Friedrich’s Ataxia are dedicated to research,” Maria said. “We focus on quality of life and how we can have people with FA living the best life possible.”

She noted that, even with assistance such as social security or disability, needs of FA patients are often not fully met. There are other ways to get equipment and money, but accessibility is an issue.

“If you’re still somewhat mobile,” she explained, “there are strict guidelines on receiving any kind of medical equipment, or even home modifications—something as simple as installing a grab bar in the bathroom or a ramp up the front of the house.”

The Curriers are also focused on educating the public about FA. To that end, they encourage readers to visit the FA Project website, which contains information about the disease and Richie’s personal experience living with FA.

Maria said this educational mission grew naturally out of Richie’s approach to life.

“Richie in his life has been so gracious to people,” she explained. “When you’re in a wheelchair, people are curious and they want to know why, and he’s empowered himself by using that opportunity to educate others and raising awareness about Friedrich’s Ataxia.”