Deborah Raider Notis, Author at Inside Chappaqua and Inside Armonk: The Magazines for New and North Castle

#TaubStrong Movement Keeps Casey Taub’s Memory Alive & Raises Funds for Pediatric Brain Cancer

December 2, 2018 by Deborah Raider Notis

Casey Taub was one of a kind. He was a funny, often opinionated, old soul with a love of Marvel movies and sports. He was the kid who could engage adults as easily as he could rally his friends. But in January 2016, Casey needed his friends and loved ones to rally around him. Diagnosed with a brain tumor, he put up the fight of his life until he passed away in July 2017.

Throughout Casey’s 17-month battle with brain cancer, the Matthew Larson Foundation for Pediatric Brain Tumors was a consistent, reliable source of support for the Taub family. Founded in 2007 in memory of seven-year-old Matthew Larson, the Foundation has funded almost $3 million in grants for pediatric brain tumor research and has helped families cope with the emotional and financial struggles of caring for a child with brain cancer.

After Casey’s death, his father, who dedicated himself to finding a positive way to cope with this devastating tragedy, joined the board of the Matthew Larson Foundation. “I wanted to help the foundation that helped us,” states Taub. “Everything I’m doing is to try to eradicate pediatric brain cancer, and I want Casey’s name to be associated with eliminating the disease that did him in.”

To that end, Taub established the #taubstrong Movement as a component of the Matthew Larson Foundation.

#TaubStrong was a slogan created by Casey’s closest sleep away camp friends at Chipinaw, who designed and sold t-shirts to support Casey while he was sick. When Casey came up to visit camp, everyone was wearing the t-shirt. “It was extremely meaningful to him,” says his father.

Taub credits the Chappaqua and Greeley community, “especially Casey’s closest friends, who have been unbelievable,” with helping to keep Casey’s memory alive. “The fact that Casey will always be part of this community is extremely important to me,” stresses Taub.

Casey was an avid soccer fan and player; he was a valued member of the Greeley soccer team. On August 22nd, Greeley Boys’ Varsity Soccer hosted its first annual Casey Taub Memorial 22:22 Soccer Jamboree benefiting the #taubstrong Movement for the Matthew Larson Foundation for Pediatric Brain Tumors.

The event, organized by Casey’s friends and teammates on Greeley Boys’ Varsity Soccer, as well as Camp Shropshire, Casey’s beloved soccer coach, began with a dedication ceremony. His father, Jonathan Taub spoke, and Casey’s number 22 jersey was retired. The Byram Hills Boys’ Varsity Soccer Team retired Casey’s number for what would have been his final high school soccer season. Soccer boosters sold CT22 merchandise and food, all of the participating teams made donations, and the event raised over $2300 to the #taubstrong Movement at the Matthew Larson Foundation. Taub hopes that this event will grow and become an annual kickoff to the soccer season in Casey’s memory.

Casey’s classmates in the 2019 Greeley Senior Class also donated proceeds from the Senior Carwash to the #taubstrong Movement. Greeley juniors, Emma Rosh and Charlotte Templeton, contacted Taub to start a club in Casey’s name. With Casey’s treasured Spanish teacher, Senor Warren, as the faculty advisor, they launched the CT22 Club. This year, the CT22 Club raised over $2000 from CT22 merchandise at Chappaqua’s Community Day.

Looking ahead, Taub hopes to extend the #TaubStrong movement beyond Chappaqua. “It would be great to get CT22 clubs in all Westchester high schools,” notes Taub, who plans to develop a full line of #taubstrong CT22 merchandise. Most importantly, Taub, who recently spoke at the Matthew Larson Foundation’s annual fundraising dinner, said that he is looking forward to the day that fundraising dinners are replaced by “celebratory dinners because there is no longer any cancers killing kids.” One day, he hopes, “Casey’s name will be associated with a cure for this horrible disease.”

For more information about the Matthew Larson Foundation, please visit www.ironmatt.org. To donate to this foundation in memory of Casey, please use #TaubStrong when you make your donation.

New Castle United for Youth: Educating the Community on Substance Abuse Issues

August 29, 2018 by Deborah Raider Notis

Uniting the community and making our younger residents feel that they have a safe place to turn can be challenging, even in our welcoming town. Enter New Castle United for Youth (NCUFY). Formed in 2016 as an outgrowth of the Coalition for Youth (CFY), NCUFY is a supportive, encouraging resource that uses youth-focused strategies to promote a safe and healthy community.

The committee’s founding members, Steering Committee Chairperson Lea Barth and Steering Committee members Leslie Kuhn and Victoria Goodman, were originally members of the Chappaqua Central School District’s R21K PTA Committee. They started attending the monthly meetings of the Westchester Coalition for Drug and Alcohol Free Youth and soon realized they could re-invent the Town of New Castle’s drug prevention committees following this model. Working with members of the community, CFY applied for the federal Drug Free Communities grant which was awarded to CFY in 2016. This grant gives the Coalition $125,000 a year, renewable annually for up to ten years, to fund prevention work in the Town of New Castle.

“Our goal is to promote a positive message and help students and teens feel empowered to make positive choices. We want them to feel confident making social choices that are right for them,” says Barth. To achieve this, NCUFY brings together parents, youth, the Chappaqua School District, the Town of New Castle, police, local businesses, medical professionals, local media, religious organizations, and others to work together to apply data-based approaches to influence the way kids make social decisions.

“We are fortunate to live in an open and accepting community. Our kids have the capacity to accept the choices of others,” states Kuhn, who has helped to spearhead several initiatives to engage local teens. Last October, NCUFY partnered with the school district to bring the motivational speaker, Ty Sells, to Horace Greeley High School. Sells discussed the importance of developing positive relationships, and the value of open conversations between parents and children about drugs and alcohol. Dr. Steven Dewey, a NYU Medical School neuroscientist and researcher was another guest that NCUFY invited to speak at Greeley’s iLab and science research classes this spring. He helped elucidate the science behind the impact of drugs and alcohol on a teenager’s brain.

In addition to participating in Community Day, with a hard-to-miss, enormous “blow up” brain, and hosting a booth at the summer concerts, NCUFY funds a prevention specialist who splits time between Bell Middle School and Seven Bridges Middle School and hosts after school clubs and presentations. Goodman hopes this specialist will promote a “good culture shift and great prevention programs.”

Summer Interns Guide Future Programming

This summer, NCUFY hired two young professionals, a social worker and a counselor to run a summer teen internship program. With over 20 students participating, this group was charged with researching potential initiatives and information, as well as developing positive prevention messages that appeal to an audience of their peers. Barth enthusiastically notes that the “kids have been great.” Kuhn adds, “We have smart kids in this community, when you give them the information, they can process it and draw their own conclusions.”

The NCUFY Steering Committee lauds the efforts of the Town of New Castle, which they find to be exceptionally helpful to and supportive of NCUFY’s initiatives. The town raised age restrictions for buying vaping equipment and cigarettes to 21; smoking is prohibited in town parks; and the town has prevented vaping stores from renting space near Chappaqua schools. “Rob Greenstein is a doer. He is consistently supportive and responsive. So is Jill Shapiro,” notes Kuhn.

And NCUFY is growing. “When we applied for our initial grant, our objective was to change people’s perceptions about teen alcohol use, hopefully reducing the amount of teenage drinking,” notes Barth. Now, they are working to increase their social media traffic, to continue increasing partnerships within the community, and to get across their consistent, positive message of preventing substance use and abuse. Long-term, the Steering Committee hopes to build something that is sustainable; they want to build something that can be passed down to a new generation of New Castle’s parents, administrators, and influencers who can support this community’s youth.

While the Coalition has yet to determine whether they have encouraged a substantive behavioral change in New Castle’s youth, Goodman says, “All of this started a great conversation.” Hopefully, this conversation will resonate throughout the community.

Northern Westchester: A Kayaker’s Paradise

April 21, 2018 by Deborah Raider Notis

PHOTO BY ROSS EAGLE
aquilinestudios.net
Wampus Pond is popular with kayakers.

Looking for a way to relax, reconnect with nature, soak in the sun, and get some exercise, all at the same time? Try kayaking. Northern Westchester, with its beautiful ponds, lakes, and river, offers various kayaking experiences, ranging from easy outings to more challenging adventures.

Where to Go

Kayakers can look no further than Wampus Pond in Armonk for an easy, serene adventure. Wampus Pond, part of the 102-acre Wampus Pond Park, is open to kayakers throughout the summer. The natural water pond was once a reservoir that fed the New York City water supply. The park surrounding the lake is particularly peaceful and filled with history, including early 20th century rock shelters.

For beautiful, endless views of blue, and a chance to experience the more challenging Hudson River waters, head west to Ossining Beach. In 2011, a kayak launch was opened at the Louis Engel Waterfront Park. This launch enables kayakers to launch off the beach rather than off a dock. Head west for a view of the Sing Sing Correctional Facility.

Travel about four miles north to Croton Point Park and kayak on the Croton River, which ardent kayaker Paul Okura calls “a local gem…so clean and beautiful.” The Croton River is crystal clear, peaceful, and scenic, and it offers exquisite views of the Palisades. Croton Point Park is one of the oldest parks in the Westchester County system. According to Mary Kaye Koch, Director of Marketing for the Westchester County Parks Department, “Croton Point is a beautiful spot for bird-watching while you are kayaking down the river. On the clearest of days, you can even see all the way down to New York City.” Visitors can plan to picnic or camp out at the park as well.

Franklin D. Roosevelt State Park, right off of Crompound Road in Yorktown Heights, offers two lakes for kayaking. Bring your own kayak to Crom Pond or Mohansic Lake, the two freshwater ponds in the park. The park itself, known for its spacious picnic areas, pool, hiking trails, basketball courts, and playgrounds, offers a chance to enjoy a range of other activities as well.

George’s Island Park, located off of Dutch Street in Montrose, offers another easy, scenic launch spot in Westchester County. “If you’re looking for a tranquil spot for kayaking, George’s Island is perfect,” according to Koch.” With a boat launch for boats up to 21 feet long, George’s Island gives kayakers an opportunity to connect with nature and observe the diverse wildlife. Boat fees vary by park. Check out parks.westchestergov.com for more information.

Touring Options

Throughout Northern Westchester, kayakers can go at it alone or sign up with a service for a more guided kayaking experience. Between May and October, Hudson River Recreation offers two to three hour expeditions on Saturdays, Sundays, and holidays. Tours meet at Croton Point Park or the Echo Canoe and Kayak Launch in Croton on Hudson. Kayak along the Croton River, passing historical sites like Van Cortlandt Manor.

Hudson River Recreation tours are geared towards adults, but if you are looking for a family kayaking experience, try Hudson River Expeditions. Hudson River Expeditions takes you a little farther north to Peekskill and the Bear Mountain area. Kayakers can either navigate their way through the Peekskill Bay and see the city from a new perspective or travel through the Bear Mountain region, visiting the historical site of Fort Montgomery. They offer both family tours with single and tandem kayaks in the Peekskill region and custom tours that can be booked for six or more participants.

Safety Precautions

John Clark, program director of Hudson River Recreation, suggests that kayakers “expect the unexpected and plan for it.” He suggests that kayakers always wear a US Coast Guard approved life jacket, take lessons, and learn rescue techniques. “You have to know what to do if you fall out!” Clark warns. Paying careful attention to the weather and tide conditions is also extremely important. Dress for the water, not the air. Finally, for a successful trip, Clark says to make sure that someone else knows where you are and where you are going.

Okura has one final suggestion to ensure that everyone on the water enjoys their experience. “People should respect the no noise zone and bring headphones if they want to listen to music.” This way people can serenely connect with their natural surroundings and enjoy the ride.

How Organ Donations Save Lives: Local Transplant Survivors & Advocates Educate the Community

March 8, 2018 by Deborah Raider Notis

Amy Silverstein
COURTESY OF UJA WESTCHESTER

When Pleasantville resident Daniel Flood was 68 years old, he went into renal failure. He was sick, depressed, and looked jaundiced. Doctors told Daniel that he had six months to find a donor or he would have to go on dialysis for the rest of his life. At that moment, his three daughters, Jennifer, Cynthia and Heather, and their mother, Roseann made it their mission to do whatever they could to find a kidney donor for Daniel.

Amy Silverstein’s first heart gave out in 1988. She received her first transplant, the heart of a 13-year-old child, after spending two lonely months in the hospital. This heart, which was expected to last 10 years, gave her 25 more years of life.

When her second heart failed, she realistically did not expect to receive a second donor heart.

(L-R) Cynthia, Heather and Jennifer
COURTESY OF FLOOD SISTERS FOUNDATION

A Dire Need for Organ Donations

The American Transplant Foundation, an organization dedicated to helping people to find organ donors and providing emotional and financial support to transplant patients and donors, estimates that over 100,000 people in this country are on a waiting list for an organ transplant. Every 10 minutes another name is added to a transplant list. Both Daniel Flood and Amy Silverstein beat the odds.

When Flood was in his 60’s, he found out that he was born with one kidney. He developed hypertension, which eventually destroyed his one kidney. Neither his three daughters nor his wife were donor matches for him. His daughters decided to take an unorthodox route and posted for a kidney donor on Craigslist. “The Craigslist ad was a shot in the dark!” states his daughter, Jennifer Flood. “We used Craigslist for selling items, finding jobs, for childcare. It was a success for all these things, and we said why not post for a kidney donor in the volunteer section for dad?” The ad sparked the interest of an acquaintance who worked for the tri-state news radio station WCBS 880AM. She interviewed the Flood sisters, enabling a wider audience to hear their story.

Silverstein already outlived doctors’ expectations. After her first transplant, she was able to finish her third year of law school, marry her husband, Scott, raise her son, and live an active, fulfilling life. Yet, life with her donor heart was not carefree. She was often nauseous, had around 15 infections every year, underwent over 70 painful heart biopsies, took thousands of doses of medicines, and suffered from breast cancer caused by the anti-rejection drugs. “I didn’t stop,” says Silverstein. “I went to the gym and stood online at the grocery store, no matter how nauseous I felt that day. I kept going. I always tried to put on a good face.” In 2014, 26 years after she received that first donor heart, her heart failed. Encouraged by her family and friends, she travelled across the country to Cedars-Sinai Hospital in California and put herself back on the donor list.

The American Transplant Foundation estimates that liver and kidney disease kill more than 120,000 people every year. Twenty-six million Americans have kidney disease, and many do not even know it. Every year, there are approximately 6,000 living donations. Living donors can donate kidneys, while hearts are donated by someone who is brain dead but still on life support. A heart donor must be under 65 years old and cannot have a history of heart disease or trauma to the chest. As difficult as it is to receive a kidney, it is significantly harder to find a matching donor heart. To get on the donor list for a heart, candidates must adhere to a strict set of health-related rules.

After the Flood family’s radio interview, thousands of strangers, reached out to them. They were able to start a widespread campaign to find a matching donor for Daniel. They tracked potential donors via an Excel spreadsheet, personally speaking to every potential donor. Jennifer Flood, a nurse, knew that Daniel’s options were limited as he could only receive a kidney from a donor with an O blood type. After their review, the list dwindled down to six potential donors, three of whom were disqualified as a result of other medical issues. According to Jennifer, “The campaign was an emotional rollercoaster.”

Everything was different for Silverstein the second time her heart failed. In a hospital bed across the country, she had little hope that she would survive. Yet she was surrounded by much love and support, which helped her to persevere. Nine of Silverstein’s friends put together a schedule, and they took turns flying from New York to California to stay with Silverstein in her hospital room. Visitors were few and far between when she was 25. At 50, after her second heart failed, her friends did not leave her side. These friendships were “life-saving and illuminating,” according to Silverstein, who said that she realized the value and magnificence of her female friendships and spoke about them at a recent UJA event at Chappaqua’s Temple Beth El.

How the Organ Waitlist Works

According to the American Transplant Foundation, the waitlist for an organ transplant is not simply a numerical line. The waitlist encompasses a gigantic pool of patients, all of whom are characterized by their blood types, health needs, severity of the illness of the candidate, geographic location of the candidate and specific genetic characteristics. If a donor becomes available, matching features are entered into the system and a list of potential candidates, starting locally and possibly spreading nationally is developed.

Daniel Flood was extremely fortunate. An unknown woman from Monterey, California saw his daughters’ Craigslist ad in 2008 and offered to donate a kidney to Daniel. The donor empathized with the family’s situation, as she lost a close mother figure and was particularly close to her father.

In December 2009, Daniel received a new kidney. His family’s unconventional campaign to find a matching kidney donor was a success.

Two months into her stay at Cedars-Sinai Hospital, Silverstein was offered another heart. Once again, she matched with a 13-year-old girl, and this child would give Silverstein the invaluable gift of a longer life. “With this second transplant, I don’t know how long I have,” noted Silverstein, who travels back to California every six months to see her doctors. “But I know that whenever I need to talk to someone, I have nine friends I can call, and I will have an honest, free-flowing conversation. I have an incredible support system.”

Silverstein is particularly lucky. Many people in her situation do not have people on whom they can rely. Autumn Porter, a Senior Program Coordinator at The American Transplant Foundation, believes it is vital to create a network of support for transplant patients. The Foundation has a mentorship program to help both transplant candidates and donors. This program also gives people a platform through which transplant candidates can help find living donors and to get their stories out to a wider audience. These resources are designed to alleviate some of the stress of this process for transplant patients.

Complications from Immunosuppresive Drugs

Since his transplant, Daniel Flood feels significantly better and appreciates that he can enjoy his life and his family. Silverstein has been re-energized by her third heart, running three times a week. However, she knows that with a heart transplant “you are trading one disease for another.” She is grateful for the medical advances over the past 25 years. All transplant patients must take anti-rejection, or immunosuppressive drugs. These drugs block the immune system, helping to protect the new organ and help maximize its functionality. Long-term use of these drugs can lead to complications, including diabetes, high blood pressure and some cancers.

These vital anti-rejection drugs are often unbelievably expensive. Porter notes, “Many people cannot afford these protocols.” The American Transplant Foundation helps transplant patients to access these medicines. The Foundation’s “Patient Assistance Program” also offers financial help for donors, helping them to pay for their expenses.

Educating Others About Organ Donations

After helping their father, the Flood sisters wanted to use their newfound knowledge to help other people find living kidney donors. They started Flood Sisters Kidney Foundation and, thus far, have helped to match 11 other people with living donors. Leveraging social media and various media outlets, they share patients’ stories. “Every story is unique. I believe people are driven to help someone in need because they have seen someone close to them receive a transplant or go through setbacks in their lives, and they want to make a difference,” states Jennifer. The Flood sisters hope to enhance and expand their Foundation, incorporating an educational component and nutritional program. They also recently held a Bon Jovi acoustic concert at Tarrytown Music Hall earlier this month with part of the proceeds benefitting the Foundation.

Silverstein inspired millions with her story. In 2008, Silverstein wrote about her first heart transplant in Sick Girl. In 2017, she authored My Glory Was I Had Such Friends, the story of how the support of her friends was life-changing for her when her second heart failed. JJ Abrams plans to bring her latest story to television. “Appreciate when you feel well,” Silverstein says.

“And remember, even in my position, all good things are possible. Try not to be defined by it. It is very easy to get swallowed up by the illness that you have. I’ve been lucky not to become my illness and that is my hope for others.”

High Fashion for the Kids, Right Around the Corner

December 1, 2016 by Deborah Raider Notis

Three years ago, Julia Rozenfeld found her calling. The Juilliard graduate and classically-trained pianist turned Wall Street powerhouse took over LOL Kids in Armonk. She quickly revamped the small clothing store and turned it into one of Westchester and Connecticut’s premier shopping destinations for the under-14 set.

Rozenfeld, a Chappaqua resident, has a four-year-old daughter and an 11-year-old son. An avid shopper at LOL Kids, she told her husband that she wanted to take it over when the previous owner decided to move to the West Coast. “It was the only shop in Westchester that I liked for clothes for my kids,” she remembers. Her husband initially thought she was joking.

Yet Rozenfeld was completely serious. She moved the store next door to a larger space with an additional floor and added more than 30 new clothing lines. She transformed LOL Kids into a high-end, hand-picked, unique boutique with over 35 hard-to-find children’s clothing brands for girls and boys. From Stella McCartney’s children’s line, Kenzo, Gautier, and Chloe to cult labels from Australia, Bulgaria, and Lithuania, Rozenfeld is introducing Westchester’s littlest fashionistas to her curated collection of clothing. “We offer a unique niche because everything is fashionably fine and hand-picked, and we try to keep the price point competitive.”

For the holiday season, Rozenfeld has chosen several one-of-a-kind items, including unique necklaces for young girls, exquisite newborn outfits, special dresses from Tutu du Monde, and this year’s favorite–giant pompom hats. She hopes people will come in for that special something, whether it be a small stocking stuffer or a more elaborate gift.

“We want to sell things that will make children look and feel very special,” says Rozenfeld. Rozenfeld, who also added photographer to her list of talents, has her daughter Sophie test out many of the girls’ clothing lines and serve as the fashion model for the store.

“We would feel very special to be able to help people out, to meet more people, and to share our vision of beautiful things with them,” says Rozenfeld.

Her favorite part of owning the store is meeting so many new people and connecting with clients. While she has lived in Chappaqua for over 12 years, opening LOL Kids enabled her to meet many more members of the community. And she says that “the most exciting part of my day is when clients text me pictures of their kids wearing my outfits. It really warms my heart.”

Stop in and introduce yourself to Rozenfeld. Experience the latest fashion trends for children, right here in Armonk. Whether you’re searching for French children’s brands like Catimini and Petit Bateau, niche Italian brands like Fun&Fun and Mi Mi Sol, or super-fashionable, reasonably priced European brands like Nikolia, Rozenfeld has them. And she will make sure you can find that perfect, one-of-a-kind outfit for your child.

PHOTOS COURTESY OF JULIE ROZENFELD

Deborah Notis is a writer and co-owner of gamechangernow.com, a free referral service connecting Westchester families to highly qualified instructors. Deborah’s writing can be found in the Inside Press publications as well as on suburbanmisfitmom.com.