Matthew, the youngest child of Corina and Vinnie DeGori of Kings Park, was born with Lowe Syndrome, a very rare genetic disorder characterized by anomalies affecting the eyes, nervous and renal systems.

Lowe Syndrome (LS) is hereditary and affects only males, causing multiple physical and mental handicaps including cataracts, muscle weakness and kidney problems. Considered an “orphan disease” because of its rarity, the syndrome affects approximately 1 in 500,000. The number of cases is growing because of improved diagnostic procedures, but according to Corina, there are only three other boys on Long Island who have the disease, which is also known as the oculocerebrorenal syndrome of Lowe (OCRL).

Matthew was born with cataracts and has developed glaucoma along with kidney problems and other complications. There is usually a “crisis of the moment,” Corina says. But, she added, they are on a good stretch right now, and Matthew, 8 is doing well and is very outgoing and has many friends in school and other activities. Corina says jokingly about Matthew, “He’s the mayor of the Kings Park School District.”

Corina, a registered nurse, started The Matthew DeGori Lowe Syndrome Foundation (MDLSF) in 2006 with the help of Jayne Rutigliano of the Torch Foundation, an organization that helps fund medical expenses for families in need. In a short amount of time Corina has endeared herself to many in the nonprofit and business communities because of her openness and sincerity. Most foundations begin with a steep learning curve to set up policies and procedures but Corina began networking in the community first and said, “I would have never met the people I’ve met without Matthew.”

Corina and her husband, a New York City firefighter, have arranged their schedules so that one of them is always home with Matthew and his older brother, Michael, 13, who does not have the disease.

The mission of MDLSF is to find a cure for LS through medical research. They are very interested in the research to genetically engineer a mouse bred with Lowe syndrome. This research is currently being funded by the UK and one of MDLSF's goals is to raise enough money to help support it going forward. "They are experimenting with drugs on our kids now," Corina says, adding "Even if there is no cure, they can do trial treatments [with the research gathered from the mouse].

To raise the money necessary to continue genetic research, Corina is producing the first MDLSF fund-raiser on June 5 at Verdi’s in Westbury. The honoree will be Wesley Walker, former wide receiver of the New York Jets who is now Matthew’s physical education teacher at Parkview Elementary School in Kings Park.

The foundation has no paid staff, so the DeGoris and their dedicated volunteers continue to do all the work themselves. David Wendt Jr., a 17-year-old local teenager who Corina describes as “just amazing,” donated the MDLSF website.

To grow the foundation, Corina is busy building the network with whatever she feels will do the most good. “I try to find a balance and will do whatever I have to do to motivate people,” she explains. But, true to her generous nature, she observes, “The people who struggle the most want you help you the most.”

For more information, go to www.matthewdegorifoundation.org or call Corina at 516-578-6513.

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