By John Lynds
The East Boston community is rallying around Anthony Albano Jr. by creating a team “Albano Strong” that will help raise money for Marfan research through the annual Marfan Foundation Walk scheduled for Saturday, June 11 on the Boston Common.
The Marfan Foundation is a nonprofit that fights for victory over Marfan syndrome and related disorders. Marfan syndrome is a life-threatening genetic disorder that most seriously affects the heart, blood vessels, and eyes. The group has been working for over three decades lobbying for more research, advocacy, and education, to make sure people afflicted with the disorder can live longer, fuller lives.
The foundation was created in 1981, the same year Albano was born. Albano was diagnosed with Marfan Syndrome when he was two after the lenses in his eyes dislocated. One of the most important aspects of Marfan Syndrome is to receive diagnosis early in life. Without an early diagnosis, people affected with Marfan Syndrome can be at risk for potentially life-threatening complications.
Albano, the son of the late Eastie political figure, Anthony Albano, has always been very educated on his condition. So in December, when he began experiencing chest pain, Albano knew he needed to head to the Emergency Rom right away because the risk of an Aortic dissection.
The ER did a CT scan and Albano’s concern was found to be true, part of his aorta had torn. Albano had his aortic arch repaired on January 29th and this was his sixth open heart surgery during his life.
The purpose of this fundraiser is to help raise awareness and advance life-saving work.
“Having the Walk at the Boston Commons is going to give us a wider exposure for raising awareness and funding of Marfan Syndrome, Loeys Dietz, Ehlers-Danlos and other related disorder research,” said Jonathan Rodis, President-Massachusetts Chapter of The Marfan Foundation. “Many people are unaware of these conditions and may have these conditions and be unaware of there dangers and complications. In addition to raising awareness with the public, it’s imperative that we raise awareness of what the true nature of these conditions are and how they should be treated by our medical community/providers.”
You can donate to Albano’s team at http://www.firstgiving.com/team/317962. For more information visit the Marfan Foundation’s website at www.marfan.org