To the Editor:
On behalf of The Joseph Lillo Spinal Muscular Atrophy Foundation for Children, “Lillo’s Lullaby,” we would like to thank everyone who made our first foundation event a complete and total success. There were so many people who decided to come out to Martell’s Tiki Bar for a beach party on Friday, June 26, and literally weather the storm. Thanks to all of you who made the trip, coming from as far south as Philadelphia and as far north as Massachusetts.
It is with this genuine support and selfless generosity that we are able to move forward in our quest to help those families afflicted with this horrific genetic disorder, as well as help with SMA research. Without you, and other folks like you, we would never be able to meet our goals.
We would like to take this time to also individually thank the following organizations that so generously donated to our event: McCabe Ambulance and Emergency Services; Peninsula Lodge No. 19, Masonic Temple, Bayonne; UNICO, Bayonne Chapter; Hired Guns MC, Bayonne; as well as all of the individuals who donated, which is entirely too many to list (you know who you are, and we couldn’t begin to express our gratitude).
As you may already know, Spinal Muscular Atrophy, SMA, affects 1 in 6,000 children born every year. SMA is the No. 1 genetic killer of infants. One in 37 people are carriers of the Recessive Genetic Gene that causes this disorder. It is not rare, as 1 in 24,000 babies are born with SMA Type I, the most progressive and terminal of all SMA types. This is the type that took our son Joseph’s life at three months old. There is currently no cure, but scientists and researchers are getting closer everyday to a successful treatment.
By helping our foundation, and other organizations like ours, there will be a cure, or treatment, in our lifetime. Please check our Web site for additional information and calendar updates: www.lilloslullaby.org.
ROSE, DOMINIC & FRANCESCA LILLO