Stony Brook Children’s Hospital is now a Certified Duchenne Care Center (CDCC). The accreditation comes from Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (DMD). This accreditation makes Stony Brook the only certified center on Long Island and in the NYC metropolitan area, and one of only two centers in New York State.
According to PPMD, Duchenne is the most common muscular dystrophy in children, affecting around one in every 5,000 boys. It is a progressive disorder affecting both skeletal and heart muscles, causing decreasing mobility, and often cardiac and respiratory issues. Duchenne affects mainly boys, and its impact affects all races and cultures. The opening of the Duchenne Care Center at Stony Brook Children’s Hospital marks a new era in the level of care available to patients in the tri-state area.
“We have an extraordinary number of families affected by Duchenne living on Long Island or in the New York City area, and until now, they’ve had to travel quite a distance, even out of state, to access optimal Duchenne care,” said Rachel Schrader, Vice President of Clinical Care and Education at Parent Project Muscular Dystrophy. “We are thrilled to add Stony Brook Children’s Hospital to our growing CDCC network not only because of the amazing work they are doing, but because of the access to care it creates for so many families.”
The Duchenne program at Stony Brook Children’s Hospital is led by program director Dr. Peter Morelli, neuromuscular specialist Dr. Simona Treidler and PNP coordinator Dawn Dawson.
“Treatment to improve mobility and to delay the onset of symptoms, requires a wide variety of treatments and specialist care,” says Dr. Morelli. “At Stony Brook Children’s Hospital, we provide individualized coordinated care for each family across all medical disciplines, to minimize the stress associated with complex disease management, and to enable a faster and more efficient dissemination of information among all involved clinicians and our families.”
For more information, visit stonybrookchildrens.org/specialties-services/clinical-programs/duchenneMD.
More than 250 guests turned out in their fall fashions to honor Island Federal Credit Union at the Ronald McDonald House Charities (RMHC) NY Metro 5th Annual Fall Celebration at Flowerfield in St. James, on Nov. 9. The event raised more than $125,000 for programs in Suffolk County.
Members of the Island Federal Credit Union Board of Directors and Management Team were on hand for the celebration, including Island Federal Credit Union Branch Manager Jose Melendez and his family, who spoke about their personal connection to the Ronald McDonald House and the positive impact the organization has had on their lives.
The funds will go toward the ongoing operation of RMHC NYM’s two Family Rooms at Stony Brook Children’s Hospital and Stony Brook Medicine Neonatal Intensive Care Unit, which opened earlier this year. RMHC NYM intends to build a new house on the grounds of Stony Brook Hospital in the near future that will to accommodate families from across Suffolk County who have a sick child receiving care in the area.
“This was a terrific celebration of the work we have done and what we plan to do — specifically in Suffolk County — in the future,” said Matt Campo, CEO of RMHC NY Metro. “We depend so much on the support of our community, which donates their money and their time, to help the families that come to us in their greatest hour of need. We thank each and every one of them from the bottom of our hearts.”
“Suffolk County has a tremendous need for a Ronald McDonald House, and we are determined to raise the funds to build it,” said Nick Croce, Board Member and Co-Chair of the Suffolk County Advisory Board for RMHC NYM. “We’ve raised $16.5 million already and with this kind of sustained support, we will be putting the shovel in the ground before we know it.”
Pictured from left, Chris Murray, VP Marketing; Larry Dunn, Senior Director of Sales & Membership Experience; Damon Rivera, VP Technology; Paul Scollan, Board of Director; Matt Campo, RMHC NYM President; Bret Sears, Island President & CEO; Jeannine Bowden, AVP; John Adragna, Board Chairman; Craig Booth, SVP/COO; Tim Aaraas, VP Retail Lending; Catherine Roger, Director of Branch Operations; Jose Melendez, Hauppauge Branch Manager; Elizabeth Cardone, Board of Director; Vinny Accardi, Member Success Specialist.
On July 27, the Long Island Cranx Foundation, completed its “Epic Rides For A Cause” biking to Stony Brook Children’s Hospital where members of the charitable organization delivered a check for $22,000 in support of Stony Brook Children’s Hospital Child Life Program and the hospital’s Pediatric Emergency Department Expansion project. The Cranx Foundation has pledged a gift to Stony Brook Children’s Hospital of $50,000 over 5 years and has already surpassed its first-year goal of $10,000.
With the help of word-of-mouth, grassroots fundraising, social media, and an event held on April 9th called “The Epic-High Five”, $22,000 was raised in about 4 months to help aid the hospital expansion project that will double the number of patient exam rooms and pediatric emergency specialists; enlarge the child playroom; purchase books and toys and bolster a pet therapy program.
“This gift and the ongoing relationship with the Long Island Cranx Foundation will have a far-reaching impact as we significantly expand our Pediatric Emergency Department to more than four times the current space,” said Dr. Carl Kaplan, Chief, Division of Pediatric Emergency Medicine, Stony Brook Children’s Hospital. “The foundation’s epic rides will help fuel our epic expansion project for our physicians, providers and nurses as they continue to care for the most critically ill and injured children in Suffolk County.”
“The connection between Long Island Cranx and Stony Brook Children’s has been a perfect fit,” said Michael Attard, Child Life Specialist, Stony Brook Children’s Hospital. “We’re incredibly grateful for their epic rides to help hospitalized children have a more comfortable, anxiety-free visit. Funds raised by Cranx helped with the purchase of cutting-edge resources such as the MRI compatible video goggles which reduce how often patients need to be sedated for MRI procedures.”
Brian LeDonne of Mount Sinai and Larry Alvarez of Sound Beach, friends for more than 6 years, were among the riders (Roy, Matthew, Loreta, Antonio, Larry & Brian) on April 9th who cycled for 20 grueling hours through the woods and endured 5 arduous laps on the 30-mile Glacier Ridge/Overton Trail System (GROT) on Long Island’s Glacial Moraine.
Matthew Herrschaft of Bayport and Brian LeDonne founded the Long Island Cranx Foundation in 2021 as a Registered 501(c)(3) Tax-Exempt Organization. The group has grown to 15 thrill-seeking mountain bikers and roadies from Suffolk County, with the collective charitable goal of giving back to the community in which they live. “I’m impressed by Stony Brook Children’s Hospital and its medical experts. Children’s health is top-of-mind for me as my wife is pregnant. We’re expecting our first child on October 3rd,” said LeDonne.
Alvarez is ecstatic that the foundation will have the opportunity each year to help Suffolk County meet its growing demand for pediatric emergency services. He joined Stony Brook Medicine’s MRI Department in 2010 and is now the lead MRI tech, overseeing the cardiac MRI program and the Child Life Program’s imaging service.
“I’ve been at Stony Brook Children’s Hospital for 11 years and have seen it grow and build. Every day, I’m grateful for the opportunity to help families and their children, and a lot of money is needed to expand the pediatric emergency room. Knowing that the ER will continue to get bigger because we are helping to contribute is something special to be a part of,” he said.
Stony Brook Children’s Hospital is Suffolk County’s only children’s hospital offering the most advanced pediatric specialty care in the region. The pediatric emergency department cares for about 21,000 patients per year.
About Stony Brook Children’s Hospital:
With 104 beds, Stony Brook Children’s Hospital is Suffolk County’s only children’s hospital. Part of Stony Brook Medicine, Stony Brook Children’s has more than 180 pediatric specialists in 30 specialties. The hospital is Suffolk County’s only Level 4 Regional Perinatal Center and Level 1 Regional Pediatric Trauma Center. It is home to the nation’s first Pediatric Multiple Sclerosis Center and also offers a Level 3 Neonatal Intensive Care Unit, Duchenne Muscular Dystrophy Center, Celiac Disease and Gluten Sensitivity Center, Healthy Weight and Wellness Center, Cystic Fibrosis Center, Pediatric Hematology/Oncology Program, Pediatric Cardiology Program, Pediatric HIV and AIDS Center. To learn more, visit www.stonybrookchildrens.org.
One Long Island kid is helping put smiles on the faces of patients at Stony Brook Children’s Hospital this holiday season. It all started when 9-year-old Sydney O’Sullivan of Holbrook was treated for kidney stones over three emergency room stays beginning in the Summer of 2021. While at the hospital, one of Stony Brook’s child life specialists paid her a visit with a toy in hand. Getting the toy helped take her mind off being in the hospital and that inspired Sydney to want to help others in the children’s hospital feel the same way.
“Some kids have to be in the hospital for Christmas, so I thought of a way I could spread some holiday cheer,” says Sydney.
Together with her mom Karen, Sydney made some chocolate reindeer lollipops to sell to raise money towards a toy donation. After posting on social media, Sydney was able to sell over 200 lollipops and raise $600 to purchase nearly 50 toys to bring to kids at Stony Brook Children’s Hospital.
“I am so proud of her,” says Karen O’Sullivan, Sydney’s mother. “She came up with this idea all on her own and is helping a lot of children.”
Sydney donated a stretcher filled with toys to the children’s hospital on December 17.
On Dec. 3, musicians from the Stony Brook Music Department’s Instrument Petting Zoo caroled throughout the Stony Brook Children’s Hospital spreading holiday cheer and joy to the children, families and staff, thanks to funding provided by Island Federal.
The Staller Center’s Instrument Petting Zoo is a program which helps the Staller Center for the Arts reach out to the community and share live interactive musical experiences for young people.
“To be able to spend time at the Children’s Hospital and see the smiles on the kids faces and the tears of joy in the parents eyes as the musicians performed holiday music was emotional, but we’re so happy we were able to come together and collaborate in this way,” said Paul Newland, the Staller Center’s Outreach Director. “We are grateful to Island Federal who helped provide the support for this initiative and we’re already planning more musical visits.”
Stony Brook Children’s Hospital gathered doctors, nurses, physicians and staff to celebrate their 10th anniversary of pediatric care this Tuesday, both in person and virtually.
Throughout the years, SBCH has provided innovative research, clinical trials and breakthrough techniques to benefit pediatric patients. The hospital has more than 180 skilled pediatric specialists who cover more than 30 specialties.
“We have a long history of caring for children, and it was with the generational knowledge and passion that we made the commitment to create an institution that would better meet the needs of nearly half-a-million children in Suffolk County,” said Maurie McInnis, president of Stony Brook University.
Even during the pandemic, SBCH had pediatric investigators on duty, researching the effectiveness the COVID-19 vaccine has on children.
Holbrook high schooler Reese Tiller attended the event and shared his experience with the children’s hospital that helped treat him when he had a cancer diagnosis.
After a soccer accident left Tiller with a concussion, it was SBCH who found out through testing that he had a large mass on his chest which was discovered to be leukemia.
“I was extremely confident that Reese was in the best place and was only going to get the best care possible,” said his mother Jaimi Tiller.
The Tiller family expressed their gratitude for SBCH and the effort it put into curing Reese’s illness. The hospital kept the family, including Reese, informed on every update possible.
“The second I got there, I felt loved and cared for,” Reese said.
The transition to the children’s hospital was easy for the Tiller family and despite being there for treatment, the overall feeling of the hospital was welcoming for all.
SBCH has become a vital part of the academic and clinical mission of SBU and Stony Brook Medicine, which aim to provide the highest quality of education and training.
With the dedication and passion of Stony Brook’s health care workers, SBCH has become a regional and national leader in children’s health care, and the first children’s hospital in the nation that created a center for the treatment of pediatric multiple sclerosis.
“You should all be proud of the outstanding clinical quality and breadth of services Stony Brook Children’s provides,” said Dr. Margaret McGovern, vice president for Clinical Programs and Strategy for SBM. “For me personally, it has been an honor to work with all of you and see your dedication and passion for improving children’s lives has been a daily inspiration.”
The Ronald McDonald Family Room — a part of Stony Brook Children’s Hospital — has served as a sanctuary for parents and family members who have a child that is in prolonged care of the facility.
Officially opening in 2013, the purpose of the family room is to provide a respite space for parents to spend their downtime while their child is being treated in the hospital, whether that be long or short term.
However, since the pandemic began, the lounge promptly shut down and is currently awaiting the green light from the hospital to reopen.
“It is sad because it shut down a great resource room,” said Tricia Telemaque, host and board member of the family room. “When we open really depends on the day-to-day and what happens with COVID. However, we are on alert and ready to go back full force.”
The lounge emulates an apartment-style environment with countless amenities for family members such as a fully stocked kitchen, private showers and laundry machines.
Pre-pandemic, volunteers would solicit the community to have restaurants, pizza places and bigger chains such as Chick-fil-A and McDonald’s deliver food that the volunteers would serve to the families of the sick children. The lounge offered breakfast, lunch and dinner.
Providing emotional support for families is another key aspect of the volunteer work. Having a person to talk to could serve as a stress reliever for the unfortunate circumstances going on in a parent’s life.
“I remember one day I was sitting in the room and this one woman was folding her laundry and she asked, ‘Could I just sit and talk to you because talking to someone while folding laundry feels normal’ so it really is more of a solace room,” Telemaque said.
According to her, the children admitted in the hospital also have siblings who come to the lounge and are often forgotten about. The volunteers make sure there are plenty of books and toys to play with, not only for the child admitted but for their siblings too.
“The intent is to not have any white coats [doctors] in the lounge,” Telemaque said. “So, it’s not a place where doctors and nurses can come in.”
One of the biggest goals for Ronald McDonald House Charities is to bring awareness to Long Islanders about what the lounge is and its purpose for the families that use it.
Since the pandemic began, the organization has continued to work hard for families who were suffering through the COVID period. However, donations of food have become more complicated due to the need to have items individually wrapped such as chips and granola bars.
The family room relies fully on donations from the surrounding community and businesses, as it serves approximately 3,600 families a year, so fundraising is essential for their need to remain active.
“When I started working in the room, I was amazed at how few of my friends knew that there was a Ronald McDonald [room] here in Stony Brook,” Telemaque said. “So simple awareness that there is such a need for something like this is very important and I think that is an underserved opportunity.”
Among many parents who have used the family room, Karen Maher said using the room has been a huge stress reliever on both her and her daughter, who is undergoing cancer treatment.
“I look at the Ronald McDonald House as a blessing,” Maher said. “They really helped my daughter’s treatment go much easier for me and her. They’d bring little gifts for her too, something as simple as a teddy or a blankie.”
With the help of the lounge and their conveniences, Maher was finally able to get the rest and relaxation she needed.
For more information on how to donate to the Ronald McDonald Family Room in Stony Brook Children’s Hospital, visit www.rmhcnym.org or call 516-775-5683.
It’s been said that all good things must come to an end.
Joseph and Maddie Mastriano, organizers of the Three Village Kids Lemonade Stand fundraising event, are currently planning the ninth and last one. The annual event, which to date has raised more than $100,000 for Stony Brook Children’s Hospital, will be held Aug. 9 at R.C. Murphy Junior High School.
Maddie, who will be turning 21, is attending Loyola University in Maryland and is a rising senior majoring in advertising and public relations. Joseph recently graduated from Ward Melville High School and is set to attend Stony Brook University in the fall. While he is undecided on his major, he is minoring in video game design.
The Mastrianos said the lemonade stand will leave them with tons of good memories due to the community members, local athletes and even celebrities who came out to show their support.
“I like to see everybody who comes to support us,” Joseph said, adding he realizes many are going out of their way from work or taking time out of their busy days.
Maddie added that friends and families have even come out of state from New Jersey and Connecticut to show their support. One highlight through the years was Chef Barret Beyer, from “Hell’s Kitchen” Season 11, helping them make a special fruit lemonade.
She said visits from Cheryl Pedisich, Three Village Central School District superintendent, are always appreciated as she has supported the endeavor since the beginning. Maddie added she also loves it when Joan Alpers, director of Child Life Services at Stony Brook Children’s Hospital, stops by.
Alpers said Joseph and Maddie are “amazing young people with, I imagine, extremely wonderful careers in front of them.” She said while the ending of the annual event is bittersweet, she hopes more young people will be inspired by the Mastrianos’ work.
“I’m so excited for all the good work that Maddie and Joseph have done, and I’m wishing Joseph a wonderful college career, and at the same time it’s bittersweet,” Alpers said. “We have had such a great connection with them, and we’ve not only enjoyed them but they’ve been so helpful in the community for us. But we understand that kids need to move on.”
The fundraising event began in August of 2013 when the siblings decided to make lemonade and sell it outside their home with some friends. At first, they thought of splitting the few dollars raised between friends, but their mother suggested donating it to charity and they chose the local children’s hospital.
“If I were to go back into my 11-year-old self, I don’t think I would have imagined this lasting more than a summer,” Maddie said. “I couldn’t have seen it going the way it’s progressed, and I think it’s just a reflection of the community.”
Formerly known as the S-Section Kids Lemonade Stand, the booth attracted more and more people each year. Hundreds of residents from all over the school district and even local celebrities came to their home in 2016. Knowing that the lemonade stand was attracting too many people for a neighborhood booth, the Mastrianos moved the event to the grounds of R. C. Murphy Junior High School in 2017, and 500 people attended over the course of another hot August day. Besides lemonade, the kids have expanded to offer food, activities and live music, and also in 2017 they were among TBR News Media’s People of the Year.
Also, that year, the siblings began finding sponsors for the event. Many local businesses as well as larger ones such as Chick-fil-A and Island Federal Credit Union pitched in to help.
Bret Sears, president and CEO of IFCU, in an email statement said the Mastrianos approached them a few years ago.
“Remarkable is the word that comes to mind when asked about Maddie and Joseph Mastriano,” Sears said. “Two young kids who had a goal of helping those at Stony Brook Children’s Hospital, and who have let nothing stop them from doing just that — not even a pandemic. When Island met them a few years ago and learned about their cause, it touched our hearts, and we knew becoming their corporate sponsor was something we needed to do.It just felt right.They certainly are two role models whom the youth of our communities should strive to emulate, and we are truly proud to call them our partner.”
In addition to all their sponsors and volunteers, the siblings said they are especially grateful for their parents and the support they have given them from their first lemonade stand.
“They’re just so supportive, and I don’t know who else would just willingly give up their front yard like they did those first couple years,” Maddie said.
She added that their parents have always been there to help to drive them around and in any way they could before, during and after the event.
“They just help us do everything they possibly could with keeping us as the lead and letting us guide them,” she said.
Maddie said it’s been surreal seeing some of the volunteers growing up, from elementary school children to young teenagers in middle school.
“It’s really cool to see how we’ve helped impact others and helped shape them wanting to give back to others in the community,” she said.
Joseph echoed the sentiment.
“It’s just a nice experience to see how much everybody really cares about helping the community,” he said. “I love seeing the teamwork of all of our volunteers trying to make the event better, and then I love seeing just random community members coming in to try to help us.”
One volunteer who has been helping out the last few years is neighbor Courtney DeVerna, 11. Courtney said while she is sad that it’s ending, she is also proud of everything the lemonade stand accomplished.
“I just think that Joseph and Maddie are great people for doing this for so long,” Courtney said.
She remembers going to the lemonade stand when it was first held in front of the Mastrianos’ house.
“My mom told me when you get older, you’ll be able to volunteer, and I felt like I could do something for the community, and it was not only that, it was just so much fun,” she said.
Maddie said Aug. 9 will be an emotional day.
“Everyone uniting for the cause that we find so special — it’s amazing,” she said. “It’s hard to put into words.”
Last year, the siblings along with family members and friends were able to hold the event in a modified way despite the COVID-19 pandemic. During the afternoon, they hosted a drive-thru event at Murphy with fewer volunteers and later that day a virtual event that featured a Minecraft version of the stand. Despite the changes, the lemonade stand raised $35,000 for the children’s hospital.
As of now, the Mastrianos said they have to follow the same format this year but, if guidelines change, they do have a plan for a more traditional event. The goal is to raise $50,000 this year and fundraising has already begun with a GoFundMe page and teams from each school who are vying for the annual Lemonhead award that is given out to the team that raises the most money.
The siblings said they won’t forget how the community, elected officials, student-athletes and more who have supported them. Most of all they have been left with life lessons.
For Maddie, she said working on the lemonade stand shaped her college major as she has created the graphics for the posters and T-shirts.
“I think it really has helped me see that I can do advertising in the future if I really want to,” Maddie said. “I don’t know if that’s the path I’m gonna take, but it has shown me that I’m capable of doing that if I end up wanting to.”
For Joseph, he said it has helped him get out of his shell.
“I was a very, very shy kid,” he said. “I still kind of am, but the lemonade stand definitely threw me out there into the world.”
For more information, visit: www.threevillagekidslemonadestand.com.
The Rotary Club of Stony Brook presented a $5,000 check to Stony Brook Children’s Hospital on May 25. The check was accepted by Elisa Ruoff, Development Officer at Stony Brook University. Pictured from left, Nancy Fogg, Elisa Ruoff, Judi Wallace, Hope Kinney, Christine Grobe and Cliff Lemkin.
The Three Village Dads Foundation recently signed an official pledge with Stony Brook Children’s Hospital to donate $100,000 over the next 5 years to the Child Life Services program. A check in the amount of $10,000 was presented on April 21 in partnership with Jeff Hendel of Hendel Wealth Management.
“Two years ago when our Foundation began it’s local philanthropic efforts, the Children’s Hospital was actually our very first recipient. What initially was supposed to be a small Three Village Dads group BBQ where I figured we could perhaps raise a few dollars for a great local cause, turned into something so much more. That event was wildly successful as we were able to raise $12,000 which opened our eyes to the effectiveness us Dads could have on our community,” said David Tracy, Three Village Dads Foundation President & Chairman.
“When we established that relationship with Stony Brook’s Child Life program we immediately felt as connected and dedicated to their mission as their wonderful staff do. To now be in a position where we are able to deliver so much more to this great organization truly means a lot to myself, my board members, and our amazing donors. Jeff Hendel of Hendel Wealth Management joined as a co-donor with this presentation. It is generous donors such as Mr. Hendel that have enabled us to do the good we strive to do in Three Village,” he said.
Pictured from left, Elisa Ruoff, Development Officer of Advancement at Stony Brook Hospital; Michael Attard, Child Life Specialist at Stony Brook Children’s Hospital; Vince DiCarlo, Three Village Dads Foundation board member; David Tracy, Three Village Dads Foundation President & Chairman; Jeff Hendel, Hendel Wealth Management President & CEO; and Three Village Dads Foundation board members Chris Carson and David Bitman.