An ocean-lover, Katherine and her former husband owned a fishing charter boat named the Tradewinds II, and operated their business out of Captree State Park.

Captree, located at the east end of Ocean Parkway at the tip of Robert Moses Beach, was in fact founded by Robert Moses as a place for Long Islanders to fish.

It is also home to the Captree Fleet, the largest public fishing fleet on Long Island, where you can charter a boat for a day of fishing on the Great South Bay or Atlantic Ocean, and everything you need is provided by the charter boat owner; bait, equipment, food and drink. If you don’t want to fish, there are boats for sightseeing and even scuba diving. For land lovers, you can fish or crab from the piers without getting your feet wet.

The Captree Fleet is comprised of between 24 to 28 charter boats owned by a group of independent boat and business owners. Katherine has served as president for the past seven years and is the liaison between the boatmen and the state. Beloved as a leader, when Katherine sold her boat, the association changed their by-laws so she could continue in her position, which is unpaid.

“We’re the largest fishing port in the state, but we’re also the forgotten port,” Katherine says. “It’s important for us as an association to let people know that we are the heart of Long Island.”

“I am one voice, instead of 24 complaining fishermen,” she laughs. “They need someone to be their advocate.”

Almost daily, Katherine arrives at the Captree piers at about 5 a.m. to check in with the boatmen. “I should hang a sign like Lucy from Peanuts that says, ‘Psychiatrist 5 Cents.’ They wait on line to talk to me,” she says.

The youngest member of the fleet is in his early 40’s and the oldest is Speedy, who is now in his 70’s and has been a fixture at Captree for decades.

The family-oriented atmosphere is a big attraction for the throngs of people who visit every year.

The fleet offers a broad range of boats, and many are outfitted for special services like catering and live concerts.

When Sandy hit Long Island, the bridge to Captree was closed. After the storm passed, Katherine served as liaison between New York State troopers and the boat owners until the damage was assessed, which was minimal. “Only one boat broke through its mooring,” she says. “It was pretty much incident free.”

What most people don’t know about Katherine is that almost 14 years ago, while in her early 30’s and a single mother of two, she was diagnosed with Myasthenia gravis (MG), a chronic autoimmune neuromuscular disease that causes varying degrees of weakness of the body’s voluntary muscles.

She had been reluctant to discuss MG publicly because she does not want to be seen as having a weakness.

A side effect of MG is fatigue due to muscle weakness so Katherine doesn’t spend as much time on the water as she used to. “I love to fish, but it’s hard at sea, a lot of muscles are required,” she says.

Every two weeks Katherine has medication administered through a port surgically implanted in her chest. The IV bag is undetectable under her clothes so she can go about her day while being treated, which takes about six hours.

Even with a schedule filled with boats and fishing, Katherine dedicates time to her other passions: education, the community and improving the lives of senior citizens.

She sits on the Eastern Suffolk BOCES school board, and is the president-elect of the Bayport Blue Point Chamber of Commerce.

On occasion she travels to Albany and Washington D.C. as a Suffolk county representative for the New York State School Board Association, and she also represents the fleet to promote fishing.

“When I’m representing the schools, I’ll wear a fish pin, and if I’m representing the boat owners, I’ll wear my school board pin,” she laughs. She says the jewelry definitely sparks conversation.

“Everything I love to do is tied together,” she says.

Katherine has taken local senior citizens under her wing as well. She wanted to hold an event that would involve the entire community, including local students and faculty, and began hosting an annual dinner dance that has grown to include more than 350 senior citizens.

“The event is to thank the senior citizens for supporting the students. We have several generations living here, and it gives everyone an opportunity to network,” she says.

Katherine’s commitment to her community doesn’t weaken her. It has given her the strength to talk publicly about her disorder and become an advocate for MG awareness.

Her contributions have not gone unnoticed. Katherine was recently selected as one of three New York state residents to appear in a new “I Love New York” television campaign to promote tourism, which will be aired in the near future.

Katherine and her sons, Brian, 26, a boat captain who works on the Port Jefferson Ferry, and David, 21, a fisherman, have made their lives around the water.

It’s a sentiment that runs deep with Katherine.

“The second people step on a fishing boat, their day is done. They calm down. It’s a wonderful environment and it’s not about catching fish, it’s about camaraderie.”

For more information go to CaptreeFleet.com, email: office@CaptreeFleet.com or call 631-669-6464.

On the deck of Katherine’s boat The Tradewinds II, Katherine with current
and past Captree Fleet captains and owners.

Patti Waszkiewicz, Regional Family Support Representative International Foundation for CDKL5 Research

February 28th marked Rare Disease Day, an international day of advocacy for those living with an uncommon medical malady. Patti Waszkiewicz of Holbrook spent the day at Intercontinental Capital in Huntington, where her husband, John, works. She was hosting a bake sale to raise money for research for their 4-year-old daughter, Emmy, who was diagnosed two years ago with CDKL5 disorder.

Most children affected by CDKL5 disorder suffer from seizures that begin in the first few months of their life. Most cannot walk, talk or feed themselves, and many are dependent on others for everything.

A few days later in New York City, Patti and two other moms from Long Island joined mothers from California, Michigan, Ohio and Pennsylvania and some women from as far away as Canada, Ireland, United Kingdom and New Zealand to meet for the “First Annual International CDKL5 Yummy/Mummy/Mommy Weekend.”

These 30 women all have something in common: a child born with CDKL5, a genetic disorder so rare that only about 600 cases are known in the world. Yet, four of these children are from Long Island, two live in the Sachem School District, and one is from New York City. Patti predicts that once doctors are more aware of CDKL5 and do more genetic testing to diagnose it, the number will increase dramatically.

Although the women came from many different parts of the world, they found comfort in one another. Before meeting in person, they had only corresponded through Facebook.

“There are not a lot of people who can relate to what I go through,” says Patti, the Regional Family Support Representative for the national CDKL5 organization. Coping with the unknown is really hard on a parent whose child has a rare disease.

“On the Yummy Mummy/Mommy Weekend we talked, shared stories, laughed and cried,” Patti says. “The entire experience was life changing.”

Not only did the women get to sightsee and shop in New York City, they were able to enjoy a well-deserved break from their routine and truly bond as friends.

“We have a slogan now: ‘Together We Are Stronger,’” Patti says. “It’s up to us to raise money and spread awareness.”

The women did just that when they were filmed outside the Today Show studio in Manhattan, wearing their green sashes symbolizing CDKL5 awareness. The organization’s founder, Katheryn Elibri-Frame of the UK, was interviewed by a news crew about CDLK5.

Patti Waszkiewicz

During their weekend get-together, the women shared therapies for their children and talked about the need for advocacy and respite care.

The women compared notes on what services and benefits were offered by individual state and foreign governments. “I found that New York has a very good support system,” Patti says, “We don’t have to fight to get the services we need,” and added, “The UK has better respite care available that we don’t have here.”

For Patti, the disorder means Emmy requires constant care, which she receives at home and the Developmental Disabilities Institute (DDI) in Ronkonkoma.

When Emmy was first diagnosed, Patti didn’t want to talk about it with her friends who have typical children.

“I asked, ‘Why me?’ Now I would do it differently,” she says, “and expose more of my life to bring more awareness.”

Like other parents with a special needs child, the Waszkiewicz family struggles to spend quality time with their typically developed children. Payton, 6, sometimes feels left out, so Patti says she makes extra time to have one-on-one time with her older daughter.

Research for a cure is of the utmost concern, but Patti believes that finding respite care is also an issue that needs to be addressed, so parents and caretakers can have an emotional and physical break from the special care these children need 24/7.

Patti is convinced that her daughter will be a CDLK5 success story. “She might go to college when she’s 21, not at 18,” Patti says hopefully.

“Emmy just might be the one who’s going to show us the way.”

For more information visit CDKL5.com or contact Patti by email at PattiWaszkiewicz@Yahoo.com.  

*This story appeared in the April issue of Milieu.

Jennifer Nevadomski, Co-Founder and Mom-In-Chief of Long Island Networking Moms

Jennifer Nevadomski is a trendsetter. For more than 10 years, she has brought together thousands of women online through her social media savvy and blogging, and now Jen is giving Long Island mothers the opportunity to meet and network with each other.

Jen, a former social worker for a foster care agency in New York City, became a stay-at-home mom after her twins were born in 2008. Last April Jen was featured on CNN’s Your Bottom Line in a piece called, “Meet a Mom Who Can’t Afford to Work,” after she had to quit her $45,000 full-time job because day care was costing her family almost $30,000 a year.

A decade ago, when her daughter was an infant, Jen became a regular contributor to a mothers’ website called Bronx Babies. When the media giant Gannett took notice of her following, they asked her to participate in its new online national network, MomsLikeMe.com, which was segmented into hyper-local parenting sites. Jen’s network was New York City. Eventually she became her groups’ “Ambassador/Community Correspondent” and, even more special, the “Mom-Bassador.” At its height, MomsLikeMe.com had more than 100 town specific sites with dedicated followings.

“I ran it for three years,” Jen says. “It was the best job.”

Unfortunately, Gannett decided to close the popular site in October 2011, removing all the content, and launched DealChicken instead.

“All of those sites don’t exist anymore,” she says.

Since then, Jen has had her hand in many different endeavors. She now owns and administers MommysLinks.com, which provides resources to interested mothers. She also operates her own social network and has published three books: “Becoming A Mother,” “Our Twins Journal” and “Mommy’s Having Twins.”

Now the mother of four children—ages 10, 4 (the twins) and 3—Jen and her husband Paul recently moved to Massapequa. Jen works from home as a behavior counselor for Ableto.com, where she video-conferences with clients from across the country.

But it’s the social aspect of connecting with other mothers that drives her.

Long Island Networking Moms

Last August, Jen attended a BlogHer conference event in NYC. “I felt such energy,” she says. She took the momentum from the seminar, channeled it into her passion to connect women online and started Long Island Networking Moms that same month with co-founder and group advisor, Cheryl Roach.

Jen announced the launch online and had no trouble finding a group of local moms interested in joining. “The first meeting we had 13 attendees; by the third we were up to 54,” Jennifer says proudly. The group now has more than 70 members in Nassau County who meet monthly. Recently Long Island Networking Moms launched a Suffolk chapter and Jen says it’s membership is growing by the day.

“We are moms in business,” she says. Long Island Networking Moms has a no-competition, business category-exclusive rule so that the members are encouraged to do business with each other.

Giving women a milieu where they can share stories, vent, give or receive advice and make new friends is also Jen’s goal.

“The group is not just for growing your business,” Jen explains. “Most of our members say they also enjoy the friendship and camaraderie.

“I love to bring moms together and help them create a better work-life balance,” Jen says.

“Being able to manage your business, family, friends and home? That’s a big thing.”

For more information, go to www.LongIslandNetworkingMoms.com or email info@LongIslandNetworkingMoms.com

*This story appeared in the March issue of Milieu.

On Oct. 27, Superstorm Sandy turned toward the Florida coast. She took a breath and weakened, but soon intensified into a storm that no one in her path will ever forget. As the hurricane approached, Nassau and Suffolk county officials declared a state of emergency on Long Island.

In Sound Beach on the North Shore, Rich and Samantha Specht, along with their three children—Abigail, 8, Lorelei, 6, and Richie, 22 months—were preparing for the storm. Samantha and the girls went to the store while Rich and his toddler son stayed home. Rich’s friend from childhood and godfather of Richie was also there to help Rich get the house and yard ready before the storm hit.

The lawn furniture had to be stored, so Rich asked his friend to keep an eye on Richie while he moved the furniture into the garage. Rich was only gone for a few minutes, and when he went back inside the house, he asked his friend where his son was.

“I thought he was with you,” he replied. Those six words immediately sank deep into Rich’s heart. Both men raced outside to look for the toddler. Richie had been told that the backyard pond was off limits, but Samantha says he was always a curious little boy.

“They found him face down in the pond,” Samantha says, with tears streaming down her cheeks.

Rich began performing CPR. The paramedics arrived minutes later and valiantly tried to restart Richie’s heart while they were en route to the hospital, and continued for another half hour after arrival. But it was too late.

Samantha was still at the store when the hospital called. In a haze, she thought they were referring to her husband, and didn’t realize that her son had passed away until she got to the hospital.

On Oct. 28, with Sandy barreling up the East Coast, people in parts of New York City were evacuated and transportation in the region ground to a halt.

Still in shock, the Spechts had to begin preparations for their son’s funeral. By the next afternoon they were without electrical power or telephone service, and didn’t get it restored until 11 days later.

“We had to drive to the post office and sit in the parking lot to get a signal to make phone calls,” Samantha says. “People couldn’t contact us or fly into New York.”

On Nov. 1, Richard Edwin-Ehmer Specht was laid to rest. He was named after his father, his great-uncle Edwin, and Samantha’s maiden name, Ehmer.

“I didn’t want him to be known as Little Richie,” Samantha says, “so my mother suggested that we call him Rees, and we did, just her and I.”

Richie would soon become known as ReesSpecht. Rich found solace in putting his thoughts about his son’s death into words. Then, Samantha says, the idea of memorializing their son took root.

“Rees always wanted to make people happy,” she says.

Rallying around the family were their friends, family and the faculty and students at the Smithtown schools where the Specht’s work. Samantha teaches German at Smithtown East High School and Rich is a science teacher at Great Hollow Middle School.

The outpouring of love and support helped get them through each day.

A local company, Kelly Brothers Landscaping of Coram, was working in the area and contacted the Spechts after learning of the tragedy.

“We didn’t know them but they heard about what happened and said they would like to do something for us,” she says. “They removed the pond. It was a constant reminder of what happened, and they just kept coming back.

They planted thousands of plants in our entire yard, and they wouldn’t take anything in return.”

Meals, movie tickets and gift certificates were given to the family by well-meaning friends and strangers.

“Everyone was so unbelievably kind,” Samantha says. “There was no way we could repay them and the community.”

To show their gratitude, they founded ReesSpecht Life in their son’s memory as a way to pay it forward.

The night before Rees died, he was photographed wearing a Superman costume.

“It’s our last good memory of him,” Samantha says.

Adam Smith, a graphic designer and friend of the family, created a logo for the foundation using Rees’ Superman picture.

ReesSpecht cards were printed and used for handouts, asking the recipient to “Help us help each other…. We all possess the ability to do something Super. Possession of this card is a solemn promise to pay it forward and perform random acts of kindness and be one of Rees’ Pieces.”

“It’s therapeutic just to know that people are doing something in Rees’ name. That makes us so proud,” Samantha explains.

“You might not know that a person is going through a hard time,” she adds. “If someone doesn’t know my story, they don’t know that I was hurt. People can mask their emotions, and paying it forward can make a tremendous difference. It doesn’t have to be monetary. The point is that you’re helping someone else.”

Rich and Samantha recently began to fundraise for two scholarships that will be awarded to a Smithtown East and West High School senior. The Smithtown Teachers Association is holding the funds until the ReesSpecht Life organization gets its 501c3 designation approved.

Meanwhile, Samantha says, they are doing their best to move forward.

“We’re finding some peace,” she says. “We can’t just sit and wallow. The reality of it is we have two little girls [to raise]. We are grieving as a family, but we have to do something for them.”

Remembering their little boy as someone who liked to make others happy is a way for the Spechts to perpetuate their son’s memory and ReesSpecht Life.

Marianne Russo is a household name to hundreds of thousands of people around the world. The Bayville resident is known for her tireless work as an advocate who empowers the parents of special needs children. Yet Marianne is a very private person. She prefers to work behind the scenes on a microphone, on her computer and her smartphone.

Marianne was a court reporter, a career which allowed her some flex time to be with her husband and three daughters. But more than a decade ago life in the Russo house changed dramatically.

Their daughter became ill with a typical strep infection and began to exhibit behavior uncharacteristic of their once bubbly six-year-old, including tics and obsessive compulsive tendencies. After going to numerous doctors, she was diagnosed with PANDAS, an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.

PANDAS is a rare autoimmune disorder that can be difficult to diagnose. But Marianne wasn’t deterred. She learned that when a person has a strep virus the body’s defenses are trying to attack the strep bacteria, but with PANDAS, it attacks part of the person’s brain.

Marianne left her job to care for her children full time. She began sharing some of the information she learned about autoimmune disorders on Twitter and quickly found a large number of parents of special needs children who were seeking information and support.

“Within months we had hundreds of moms talking,” she says. “I set up a chat room and it went crazy. It really doesn’t matter what the diagnosis was, the emotions and challenges are universal.”

Marianne’s morning chat gave parents a forum where they could communicate with each other. But Marianne realized that a glut of misinformation being shared needed clarification.

“I knew how to get in touch with the best doctors in the world,” she says. “I could bring the doctors on a talk show so the parents didn’t have to be misinformed.”

She founded The Coffee Klatch Special Needs Talk Radio to help parents navigate through the often complex and isolating world of special needs parenting. The Coffee Klatch airs a variety of shows and segments covering topics that affect children with all disabilities, with a strong emphasis on autism. Marianne can recite the list of experts and their accomplishments who have been on her show verbatim.

Temple Grandin, the subject of an Emmy award-winning HBO documentary, is a frequent guest on The Coffee Klatch, and talks to parents about gifted children. Dr. Richard Selznick, a nationally certified school psychologist, speaks about children whom he calls “shutdown learners” because they struggle in school. Dr. Russell Barkley, another popular guest, is known as the foremost expert on Attention-Deficit/Hyperactivity Disorder (ADHD).

With more than 180,000 listeners, the popularity of The Coffee Klatch continues to grow.

“I only choose guests who are the best in their field,” Marianne says. “The Coffee Klatch is a non-judgmental, respectable venue, no politics or religion, just support.”

Marianne believes that helping parents to accept their children as they are is critical to the family’s well-being.

“Once you accept that your life changes and will be different, then you can move forward,” she says.

Parents should be cognizant of their children’s feelings, Marianne explains, and not expect to transform their children on demand.

“We want to fix them,” Marianne says, referring to the children,“but they are not broken, and we need to choose our words carefully so the kids don’t think that they’re broken.”

The special needs community is divided on some issues so Marianne selects topics to be discussed on air with care. You won’t hear about the vaccine debate on her shows.

“Nothing you say is going to change anybody’s mind,” she says about the controversy surrounding their use. “It’s like politics.”

Marianne would rather focus on proven answers and treatments. Dyslexia can now be treated in boys because of the studies that were done on XY chromosomes, she says, adding that there have been advancements in the treatment for children with bi-polar disorder as well.

The Coffee Klatch shows also share information on children’s education and their rights to be provided an education commensurate with their physical, mental or emotional disorder.

“School is another challenge,” Marianne says. “It’s so stressful to educate these kids; we want to give them options.”

But, she adds, “We need more advocacy on the local level.”

The course of treatment for many of these children follows the DSM-IV, the manual used by clinicians to provide a formal diagnosis of autism and related disorders published by the American Psychiatric Association.

“Up until now children were diagnosed with mental illness on the same scale as adults,” she says. When you hear the words “mental illness,” take out the “mental” and remember “illness,” she advises.

The Coffee Klatch has aired several shows on the DSM-IV guidelines. The updated DSM-V is being released in 2013, so educating parents on the impact the revisions can have on their children’s diagnosis, services and treatments is a top priority for Marianne.

“There’s a difference between being diagnosed with a disorder or a disability,” she explains.

Because Marianne has walked in their shoes, she knows that the challenges that are faced may be different for each child, but the emotions and the impact on the family are the same. She advises parents to boost their children’s self-esteem with praise, positive reinforcement and love.

Her quest for finding vital information to share with parents is as strong today as when she began her quest for answers almost 15 years ago.

“I love when I meet somebody that could help thousands of people,” she says.

As a parent advocate and the voice for the many who cannot speak for themselves, Marianne vows to continue seeking the experts who can give these parents what they so desperately need for their children: hope.

Danielle Taylor of Oyster Bay brings the best of both worlds together:
Traditional paper books and quality eBooks published by her company Bish Bash Books.

Danielle Taylor, a mother of two from Oyster Bay, wanted to instill her love of reading into her sons Andrew and Christian, now ages 4 and 3. She began reading to the boys when they were very young and found that sitting quietly and enjoying a book was a wonderful way to connect with them.

Danielle, who has a background in software development, had worked for a global investment bank creating software solutions but decided she wanted to use her skills in a more altruistic profession.

“I wanted to do something heartfelt,” Danielle says. “Something that I believed in.”

For Danielle, reading eBooks to her children became an interactive experience that was fun and exciting. She was intrigued with the confluence of technology, education, literature and art, and began to explore the business side of publishing.

The world of children’s book publishing is growing larger by the minute as more small companies and entrepreneurs vie for a share of the market. For Danielle, publishing quality children’s books was a profession she believed in.

She launched Bish Bash Books in January 2012, offering original reading material that is written to engage, educate and entertain children in a variety of formats including eBooks, classic paper books, storybook apps and podcasts.

Millions of parents eager to introduce their children to reading at an early age are furiously gobbling up this new technology, resulting in skyrocketing sales of eBooks. According to Digital Book World, an online eBook community, an estimated 65 percent of American children will have access to an eReader by the end of 2013.

Some books from our childhood still hold a special place in our hearts. Many of us can even recall the scent that wafted from the pages of a favorite book along with memories of a family member reading a story aloud or the hours spent totally immersed in a story, escaping from the cares of the world.

Today, eBooks can almost make a story magically come to life. Danielle says there’s a need for both traditional and digital formats and has plans to produce paper books from her original eBooks and vice versa.

Last September Bish Bash Books published its first eBook through iTunes, and next plans to distribute its titles through Amazon and Google.

Even though Bish Bash Books is small, it can still compete with publishing giants like Simon and Schuster and Random House.

“New technology levels the playing field,” Danielle explains. “With eBooks you develop the book once and distribute it over and over.”

Because today’s global market is as accessible as the local Barnes and Noble, a best-selling eBook is a distinct possibility.

Recently Bish Bash Books announced a give-back program to benefit the local community and help promote children’s literacy.

“When we sell 50,000 eBooks, we will donate a set of iPads to a local school,” Danielle says.

Her company’s goal is to publish 20 eBooks per quarter which will contain all original characters, stories, illustrations and music. Danielle is very cognizant of the quality of the material that is published so she can ensure that the reading experience is educational and not like a video game.

“Right now we have six books published, so that’s really exciting,” she says.

“I want children to get hooked on the simple pleasure of reading,” Danielle says. “We want to encourage and help children learn to read in a fun way.”

In the near future Danielle has plans to begin publishing non-fiction eBooks on topics like the weather, constellations, water and dinosaurs.

“I’d like to focus on young adventurous readers,” says Danielle.

Reading is critical to a child’s success in school and in life, so Danielle wants to make it fun and educational.

“Reading, music, and art—all of these are what keep me going,” she continues.

“It’s all of our responsibility to expose children to everything we can.”

In every issue of the Long Island Press and our sister publication, Milieu Magazine, the Fortune 52 column brings you stories of dynamic women who have made a significant and unique contribution to Long Island. To acknowledge their success, Beverly hosts tri-annual networking events that are attended by hundreds of LI business professionals, non- profit leaders and entrepreneurs. If you are interested in knowing more about the Fortune 52, or know a super woman who deserves good Fortune – and a profile – email Beverly at bfortune@longislandpress.com.