Duchenne Muscular Dystrophy CHARITABLE Organization

We have three beautiful boys, living in the Dyker Heights section of Brooklyn, New York. Our eldest, Jayson is 16, Carmine is 14 and Vincent is 11 years old.

In 2016 we were devastated and emotionally destroyed when we learned that our two younger boys, Carmine and Vincent, were diagnosed with a rare form of muscular dystrophy Duchenne.

We noticed Carmine had trouble keeping up with his peers. On several occasions, people had commented on the size of Carmine’s calves. We had to persuade our pediatrician to test him for DMD. Reluctantly, he did the blood test and the next day he called and said you were correct, his CPK level is extremely high. We immediately did our research and found the very best, most knowledgeable doctors in the field. Sadly, when we took Vincent along for that first visit, they informed us that he was likely to have Duchenne as well.

Duchenne muscular dystrophy (DMD) is a devastating, progressive muscle disease that causes muscles to become weaker and over time until it affects the whole body. Most boys who have it do not survive beyond their late twenties, and those that do will be using a wheelchair by age 12. Living with Duchenne makes the simplest of tasks become difficult, and in the later stages, heart and breathing muscles begin to fail.

Sweet loving boys who just want to enjoy their lives like their peers. They are huge NY Rangers fans and just as huge NY Yankees fans. They used to play actively, when they were younger, Now their bodies can no longer move the way they used to.

We watched Carmine go from playing baseball and dancing in our living room to not being able to walk. Now he can no longer stand. It is heart wrenching as a parent to watch this awful disease consume our boys lives. We have a constant helpless feeling knowing that we can’t stop this disease from progressing.

Carmine is a smart, outgoing and sweet 14 year old young man. He is a freshman at Xaverian HS and he is already aspiring to become a sports broadcaster. He likes science, sports, traveling, PlayStation and he is a true foodie!

Vincent is an 11 year old boy with a sweet and outgoing personality as well! He is in the 5th grade at St. Bernadette Catholic Academy. His nick name is “Two Cents” because he always puts his two cents in about everything! He is always the first one to laugh out loud! Vin likes sports, following YouTubers, traveling and of course, he is a foodie too!

Older brother Jayson has shown amazing character for someone his age. The level of compassion he has for his brothers is beyond comprehension. He would carry them both on his back across the world if they needed to get there. We are touched everyday by how he helps us and his brothers.

We have met so many amazing doctors along this journey. All on a serious mission to save all of the lives of DMD boys. We have befriended so many wonderful parents who also have beautiful boys with Duchenne and many organizations that are focused on finding a cure and anything to help slow down the progression of this disease. We have been deeply touched by our friends and families, who offer constant emotional support.

We have been lucky to have all of Carmine and Vincent’s classmates always willing to help and take care of them. Their schools and amazing teachers and staff–all trying to help our family in any way they can. We have been blessed by the Sisters at St. Bernadette. They are and have been a God sent to our family. When Carmine transferred to Xaverian HS this past Sept., we were not sure how the transition would go. We are extremely grateful to the amazing faculty, staff, teachers and fellow students at Xaverian for embracing Carmine and making sure he was comfortable and felt right at home. Before school even began, so many lovely staff from Xaverian reached out to make sure Carmine was all set for his new school year. We are blessed and thankful beyond words

We need your help. Not only for our boys but for the many other families and boys that are affected by this disease.

Our main goal is to raise awareness and ultimately, find a cure.

God bless you and thank you for helping with our mission.

We have put in place a Strong Team of Directors on our Board who will be relentless in getting our Mission Accomplished.

Board of Directors

Mr. Jay Gagliano
Mrs. Cara Gagliano
Mr. Richard Cuneo
Mr. Michael Repole
Mr. Michael Ditommaso
Mr. Fabio Borgognone
Mrs. Lisa Rutigliano
Mr. Andrew Zurica