(MINEOLA, N.Y.) – Nassau County Legislature Minority Leder Delia DeRiggi-Whitton (D – Glen Cove) and Legislator Carrié Solages (D – Valley Stream) welcomed Port Washington resident Mazzy Sass and her family to the Theodore Roosevelt Executive & Legislative Chamber on Monday, Sept. 23 to recognize her tireless advocacy in the fight to conquer Marfan syndrome and its related conditions.
Marfan syndrome impacts approximately one in 5,000 people – and about half of those with Marfan or a related condition have yet to be diagnosed. Marfan syndrome affects the body’s connective tissue, which holds all the body’s cells, organs, and tissue together. This tissue also plays an important role in helping the body grow and develop properly. Common ailments associated with Marfan can impact the patient’s heart, eyes, joints, and skeletal systems – impacts which can be managed once diagnosed.
“This genetic disorder can be a silent killer if undetected,” Mazzy said. “The average life expectancy for someone undiagnosed with Marfan is just 45 years, but with proper diagnosis and monitoring, life expectancy for someone with Marfan is nearly the same as someone without the condition. Tragically, almost half the people who have Marfan syndrome are unaware of it.”
Mazzy, a senior at the Port Washington School District’s Paul D. Schreiber High School, has channeled her lived experiences with a Marfan-related syndrome into life-saving public advocacy. As part of her efforts, Mazzy has worked closely with the Port Washington-based Marfan Foundation, whose mission is to save lives and improve the quality of life of individuals with Marfan syndrome and other related disorders. She has served as a counselor at the Marfan Foundation’s Camp Victory in Georgia; written articles for the Foundation about her journey; volunteered at fundraising events; and spoken with young people living with Marfan and other related conditions to share her experiences and assure them that they are not alone.
Embracing the philosophy that “awareness is the most powerful tool that we have,” Mazzy and her family are continuing to advocate for both New York State and Nassau County to proclaim February as Marfan Awareness Month.
“It would demonstrate Nassau County and New York State’s commitment to improving the health and lives and health of all residents by reinforcing that knowledge is truly power,” she said. “Together, we can raise awareness and save lives.”
Minority Leader DeRiggi-Whitton said she and her colleagues were in full support of recognizing Marfan Awareness Month annually and were hopeful to hold a dome-lighting ceremony and dedication in 2025.
“As a mother who has watched her own daughter navigate her journey of living with diabetes, I know how daunting it can be when you are first confronted with a challenge – and how gratifying and inspiring it is to see your child thrive in the face of adversity,” she said. “It was truly a privilege to welcome Mazzy and her family to the Nassau County Legislature, and we are committed to doing all we can to support the life-saving advocacy that the Sass family and the Marfan Foundation are leading - right here in the Port Washington community.”
For more information about Marfan syndrome and related conditions, visit The Marfan Foundation online at https://marfan.org/.
PHOTO CREDIT – Photo by Peter M. Budraitis