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When two Mount Sinai moms whose sons fall on the autism spectrum noticed a lack of support and resources in Suffolk County to help families affected by the disorder, they took to Facebook to form “a little support group” — made up of 12 moms in a living room.

A year and a half and 1,500 members later, the nonprofit Suffolk Aspergers/Autism Support and Information has blossomed into a haven for those dealing with disabilities, enriching the lives of special needs families through essential services and programs, as well as emotional and financial support.

“We’ve literally become an autism family,” said SASI co-founder Priscilla Arena, whose 10-year-old son was diagnosed at a younger age. “We feel a great sense of responsibility to every single parent and child and doing the right thing by all of them. I’m doing this not just for my son, but for everyone’s children because we need to do this.”

Shoreham resident Alonna Rubin, on right, and her son Jack, who has autism, during Suffolk Aspergers/Autism Support and Information’s Blue Party fundraiser.Photo by Kevin Redding

While the group grows at an exponential rate, as does autism diagnoses throughout Long Island. Its founders, Arena and Stephanie Mendelson, took their outreach for autism to whole new heights June 8 with their first annual Blue Party fundraiser.

In a grandiose ballroom at The Inn at East Wind in Wading River, hundreds of local residents, business representatives, elected officials and celebrity guests dressed in blue, the official color of autism awareness, danced the night away to live music and took part in casino gaming, raffles and auctions all in the name of SASI and autism.

Sponsors of the gala included Sky Zone Trampoline Park in Mount Sinai, Powerhouse Gym in Miller Place and Investors Bank in East Northport. An international theme was represented by cuisines from different cultures because, as Arena said, “Autism doesn’t discriminate based on race or socioeconomics.”

All funds raised went toward a physical office for the nonprofit, as its members currently meet once a month at Mather Hospital, and the expansion of the nonprofit’s numerous programs for families, including their Life Skills program, a 12-week program that teaches teenagers and young adults how to be independent — everything from tying their shoes to reading off a menu and paying bills.

Mendelson, whose eight-year-old son Jacob struggles with motor skills, speech delay and overwhelming anxiety as a result of his autism, said she realized early on that he wasn’t meeting the milestones his twin sister was. When she and her husband got the diagnosis, she said she felt a mixture of relief and profound sadness.

“We felt alone with everything that was occurring with our son, and heard about the group … he now has friends he can relate to. We’ve learned a lot … it’s incredible and I don’t feel like I’m alone.”

— Lisa Gerstein

“My instinct was to wrap him in a cocoon and protect him,” Mendelson told the room. “I realized at that moment that it was my job to be his advocate, his coach, his teacher, his biggest fan. I felt overwhelmed and scared at the idea of his outcome and future resting on my shoulders … nevertheless, we began our journey and immersed ourselves in the world of autism.”

After she met Arena at a business meeting in late 2015, the two shared a desire to provide families a place to go where they didn’t have to feel as lonely and isolated as they did.

Part of the $7,000 donated to the advocacy program will help parents struggling to get proper services within school districts and raise awareness and acceptance among regular kids. The group does not yet know the grand total raised during the event, but the goal was $50,000.

“We want to be the autism resource center in Suffolk County, a central resource for parents no matter what their issue is,” Mendelson said. “And if we don’t know, we can find somebody who does.”

Monica Nichols, who serves as parent liaison at New York Therapy Sensory Gym & Speech and Language Center in Port Jefferson Station, which provides programs and social skills groups for those with autism, said connecting with other parents helped her most when her own child was diagnosed.

“By far, for me, the most valuable resources have been other parents, because it’s really from other parents where you learn what’s out there in a more meaningful way than what a doctor can tell you — it’s what makes it special,” Nichols said. “[SASI] has been a big shift, they’ve really done a great job at outreach and membership and making each individual family feel part of a bigger family.”

When Lisa Gerstein, of Centereach, first joined the group in its beginning stages, things got better quickly.

“We felt alone with everything that was occurring with our son, and heard about the group … he now has friends he can relate to,” Gerstein said. “We’ve learned a lot in terms of what to do with dealing with the school district and what to ask for … it’s incredible and I don’t feel like I’m alone.”

Suffolk Aspergers/Autism Support and Information founders Stephanie Mendelson, on left, and Priscilla Arena, on right, with former World Wrestling Entertainment competitor Mick Foley at SASI’s Blue Party fundraiser. Photo by Kevin Redding

Daniel Korcz, a 22-year-old college student with autism, who hopes to mentor young people on the spectrum, said the nonprofit has brought him a lot of happiness. “It’s pretty amazing that there’s an organization to help people like me, who are smart kids that are on the spectrum,” the Islandia resident said. “It provides them support and assistance that they might need.”

Among some of the entertainment of the evening were TKA, a Latin freestyle trio prominent in the 1980s and early 1990s, and former Anthrax singer Dan Nelson, who performed Beatles and Elvis songs with his band “Dan Nelson and The Downfall.”

World Wrestling Entertainment Inc. Hall of Famer Mick Foley, of Smithtown, showed up to the fundraiser willing to help in any way, as the cause hits him close to home. His 16-year-old son Mickey is on the spectrum.

“This is an issue that kind of chose me, so I readily agreed to be part of this,” Foley said, adding he hopes this is a big success for the group.

Discussing his experience as a parent of an autistic child, he said he wished he’d been more aware.

“I look back at the videos when he was much younger and realize I should’ve known a long time ago,” he said. “I think it’s important that people become aware and acceptance is incredibly important. Learn as much as you can, find a great support group and don’t feel like it’s the end of the world because it’s not. Being the parent of a child with autism is definitely a struggle, but it’s also a great adventure.”

Local nonprofits gathered in East Northport to share ideas and network. Photo by Kevin Redding

A community bank and a financial education group recently partnered up in an effort to help local nonprofits thrive.

On March 25, the Equity First Foundation, an organization that primarily works with small businesses in financial distress, hosted a community breakfast for nonprofit organizers and supporters at Investors Bank in East Northport.

The networking event gave the crowd of good-hearted people who advocate for important causes across Suffolk County a rare opportunity to exchange business cards and ideas with one another.

Equity First Foundation Founder and President Rhonda Klch, a Rocky Point resident, speaks to local nonprofits during a community breakfast. Photo by Kevin Redding

Representatives from a wide range of volunteer organizations — that help everybody from families to children to veterans — bonded over their shared interest in providing a service to those who need it most.

Priscilla Arena, executive director of Suffolk Asperger-Autism Sport and Information, a Mount Sinai nonprofit that serves the needs of the autism community throughout Long Island, said the event benefitted nonprofits far better than social media ever could.

“There’s nothing better than a face-to-face meeting with anyone, with any decision makers,” Arena said. “And here you have a room of decision makers and people that make things happen. You have the right people in the room, it’s communities helping other communities and it’s fantastic.”

Communities helping other communities is exactly what pushed Investment Bank Branch Manager and Miller Place resident Amanda Seppi to pursue the idea of the gathering with her frequent collaborator Rhonda Klch, a Mount Sinai resident and executive director of the Equity First Foundation.

Seppi, whose bank is geared toward community grassroots organizations and overall community giving, said she wanted to bring nonprofits from the local area together to network with one another and potentially help strengthen their individual causes.

“I was finding that nonprofits don’t necessarily interact with one another to develop strategies to grow, and I figured it was a win-win for everybody to be able to learn about one another,” Seppi said. “[Ultimately], I want them to be able to reach a wider audience, to be able to raise funds in order to escalate and continue to do the good they’re trying to do for the community.”

The nonprofits don’t have the exposure they deserve, she added.

“I’d like to bring as much attention to the people who are doing good for nothing, it’s important to me to have them grow and do well,” Seppi said.

Klch agreed, feeling as though the nonprofits could use all the help they could get in terms of funding, which all nonprofits rely on to survive.

Through Investors Foundation at the bank, nonprofits can receive grants and scholarships.

Members of local nonprofits share ideas and network. Photo by Kevin Redding

“With a lot of changes happening in the economy, a lot of grants are no longer available, qualifying for funding is much more difficult and even your local business community that would normally support different fundraising initiatives, because of their own setbacks, aren’t able to provide as much,” Klch said. “What we’re looking to do is have nonprofits partner and work uniformly. If I have money or resources coming into my organization, I can offer it to somebody else.”

Klch presented “The Haven,” a beachside retreat that nonprofits can offer to clients who may be facing economic hardships caused by illness, death and addiction. The retreat would serve as a mental reprieve for individuals and families, as well as a sponsorship opportunity.

Among some of the organizations at the gathering were Youth Directions & Alternatives, a community agency that serves youth and families in the Northport-East Northport-Elwood-Harborfields school districts; Maria’Z Hope Foundation, a group made up of women dedicated to providing support for those seeking an alternative approach to medical healing; and East Northport-based General Needs, which helps homeless Long Island veterans and their families through charitable donations and support.

Lonnie Sherman, founder of General Needs, started the group 10 years ago when he realized there were 5,000 homeless veterans on Long Island without basic necessities like socks, underwear and boots. Today, the group takes care of about 3,000 of them, cooking food, helping to treat those suffering from PTSD and delivering hundreds of pairs of boots so they can get jobs.

A recent grant from Investors Bank allowed the group to help veterans get apartments.

“When I go to an event like this, I want to walk out having had a conversation with one person that’s going to listen, so we get the word out … ultimately that’s going to make a difference,” he said. “We [nonprofits] are the ones who can make a difference.”

By Rebecca Anzel

Melonie smiled as she watched her son Justin-Joseph, or J.J. for short, land several backflips on the trampolines at West Hills Day Camp in Huntington on Saturday. The activities at Suffolk Aspergers/Autism Support and Information’s first annual Family Fun Day — zip lines, face painting, sand art and a water slide, in addition to the trampoline park — were the perfect outlet for J.J.’s vast supply of energy.

J.J. is on the autism spectrum — Melonie is, too. “People look at us differently,” she said. “For me, it’s important for J.J. not to have that painful experience.”

SASI, a not-for-profit support group that provides special needs families with helpful resources, provides that sense of community Melonie wants for J.J. Founded in the living room of co-founder Stephanie Mendelson on Dec. 4 of last year, SASI has grown from 12 parents to over 700 families throughout Suffolk County and across the rest of Long Island in eight months.

Co-founder Priscilla Arena said Family Fun Day was meant to be an event for children on the autism spectrum to have carefree fun, and a way for families to bond.

“[I’m excited] for our kids to make friends — to see them smile. Here, they’re part of one community.”

—Priscilla Arena

“[I’m excited] for our kids to make friends — to see them smile,” she said, tearing up. “Here, they’re part of one community. They are the popular kids in SASI.”

Mendelson and Arena, both from Mount Sinai, have children on the autism spectrum. They found there was a lack of resources on Long Island for families and formed SASI as a support group to fill that void.

“Parents found themselves lost, confused, hopeless, alienated, isolated and alone,” Arena said. “SASI created an environment where they could come together and share their stories and experiences.”

To its members, SASI provides information about available resources, advocacy, financial and emotional support. On the last Friday of every month, the group hosts speakers at John T. Mather Memorial Hospital in Port Jefferson — so far, families have heard from a representative from Parent to Parent, a state planning attorney, a Medicaid broker and a parent advocate for education.

The group’s first speaker, special education advocate Danielle Brooks, was at Family Fun Day giving free advice to families. She said SASI is a special organization because it built a caring network for families in a short period of time. The event, she said, was a great opportunity for children to have fun in a safe environment.

SASI also hosts a birthday party club for its member’s children, who range in ages from kids just shy of 3 years old to adults in their late 20s. Arena said children on the autism spectrum have difficulty making friends, so sometimes there are not many others to invite to a child’s birthday party. The group is also working on a lending library, which will help members borrow books donated to the organization; a job skills program; life coach program and blue pages resource handbook, which would help parents find services they need across the island.

Legislator Sarah Anker (D-Mount Sinai) said she is “thrilled and excited” that Arena and Mendelson founded SASI. Instead of complaining about a lack of resources, she said, the SASI co-founders work hard to address issues.

“I think SASI will be able to address problems and advocate with a stronger, louder voice.”

—Sarah Anker

“I’m really supportive and beyond happy that Priscilla has taken this concern and made it into a centerpiece to gather around — creating this organization so people have a place to go for information and resources,” Anker said. “I think SASI will be able to address problems and advocate with a stronger, louder voice.”

The group has also gained the attention of U.S. Rep. Lee Zeldin (R-Shirley), who is sponsoring a bill to ensure Americans with disabilities have access to necessary health-care equipment.

“In Congress, one of my top priorities is ensuring that all Americans with disabilities have the resources they need to live independently and happily,” Zeldin wrote in a statement. “I thank the Suffolk Aspergers/Autism Support and Information group for their work in our community to help children and adults with disabilities.”

Family Fun Day was held at West Hills Day Camp in Huntington, a facility famous for its autism-friendly Gersh Academy. The facility donated the space for the event, which Anker said had about 800 attendees.

In addition to the attractions, the event also had refreshments from Crazy Crepes, Mr. Softee and Kona Ice. Families could purchase t-shirts or raffle tickets to win one of many donated baskets.

The event was just the first of many more to come, Arena said. “We’re new, but we’re just getting started.”

For Melonie, Family Fun Day was the perfect way to spend time with her son.

“It’s everything to see smiles on all the kids faces,” Melonie said. “They don’t get this a lot.”