Stacey Pfeffer

Loving Learning (Chappaqua)

August 24, 2019 by Stacey Pfeffer

By the time this magazine reaches you if you have kids in the school system, you’ll probably know their teachers, classmates and bus schedule for fall. My biggest wish for my kids at school this year besides an easier bedtime routine is that their teachers inspire them for a lifetime of loving learning. We all know that learning doesn’t stop with a diploma from our highly rated high schools or a prestigious graduate program. As Albert Einstein once said “once you stop learning, you start dying.” And I agree wholeheartedly so be sure to check out the article on Chappaqua’s Continuing Education Program and find a class that suits your interest. There’s truly something for everyone.

One of the best parts of my job is that I feel like I am constantly learning by reading articles submitted by our talented cadre of writers or by interviewing sources, there is always something new out there happening in our town.

I had the privilege of interviewing Jamie Petrone who is living with transverse myelopathy, a spinal cord injury and see first hand how robotics are helping her to walk again at the Burke Neurological Institute to coincide with September, Spinal Cord Injury Awareness Month. I also was humbled to reacquaint myself with the four young students in the district who grace our cover and have created innovative programs to honor their friend Scarlett Chwatko, who passed away from brain cancer this spring. After all, learning isn’t strictly about academics. It is also about kindness too and how our actions can help others in need.

Speaking of kindness, turn the page to read about the FoodieBus which also morphs into the the HELP (Healing, Educating, Liberating People) Bus through a partnership with Feeding Westchester, an organization with the mission of ending hunger in Westchester County.

May you enjoy the rest of summer and all of the bounty that fall brings,

P.S. I just had to share this Draw for Paws photo of my dog, Arlo created by a talented sixth grader at Bell, Jake Sheehy. Check out the Draws for Paws article on page 30.

Chappaqua Summer Scholarship Students Build Storage Shed As Thank You Gift for Community

August 24, 2019 by Stacey Pfeffer

A 10 foot by 12 foot shed built by hand from this year’s Chappaqua Summer Scholarship Program (CSSP) students will soon be used to help with storage needs at Horace Greeley High School as construction continues at the high school. The shed was built as a way to give thanks to the Chappaqua community for supporting the program, now in its 51st year. Each summer Chappaqua invites 22-24 promising students from under resourced schools in the Bronx to join the community. The program is made possible because Chappaqua families open their homes up to host these students.

Although none of the students are construction workers several donned hard hats and worked with hammers nailing together the floor, walls and roof. “Over the years, the Chappaqua Central School District has been incredibly supportive of our program. We wanted to give thanks and this shed was the perfect way to do so. Our Bronx CSSP students have had a great time building it and we are grateful four our teachers, Mike DeBellis and Chris Stasi for making this happen,” commented Ellen Adnopoz, the Executive Director of CSSP.

“This is something I would never do in the Bronx,” commented Brian Nunez, a second-year student in the program. For three consecutive years, these specially selected students like Brian attend academic classes at one of the Chappaqua schools in the mornings and participate in a range of recreational and cultural activities in the afternoon. The program which is entirely run by volunteers seeks to broaden the students’ horizons and also help prepare them for college.

The shed will remain on the HGHS campus indefinitely.

At Burke Neurological Institute: How Robots are Helping Persons with Spinal Cord Injuries

August 24, 2019 by Stacey Pfeffer

When you first meet Jamie Petrone, it is impossible not to notice her engaging smile and friendly personality. The 42-year-old has an optimistic outlook on life which is a bit surprising given her diagnosis of transverse myelopathy (TM), a type of spinal cord injury that has caused her to use a wheelchair for much of her life. But instead of focusing on her disability, Petrone has broken through barriers and is changing people’s perception of what it means to be disabled.

Petrone was a 19-year-old student studying musical theater at Shenandoah Conservatory and one day was not able to get out of bed. She had suffered a stomach ache at the time and was taking a prescription medication which resulted in a severe allergic reaction and a nearly fatal illness called Stevens-Johnson syndrome. Doctors believe that this syndrome triggered her to have TM which ultimately led to paralysis in her lower extremities but it took almost ten years before she was definitively diagnosed with TM.

The Mission of BNI

Despite this, Petrone is amazingly engaged in studies to get her to walk again with the help of a team of clinicians and scientists at the White Plains-based Burke Neurological Institute (BNI). BNI is a leading, nonprofit, research institute devoted to curing neurological diseases and injuries. Sixteen laboratories and more than 100 people in the Institute focus on identifying and testing novel strategies to repair the brain and the spinal cord. Strategies include drugs to unlock repair in the damaged spinal cord as well as training devices using the latest robotic technology. BNI is based at Burke Rehabilitation Center and works in conjunction with Weill Cornell Medical.

BNI occupies a unique space for those with neurological impairments including patients suffering from a host of health problems such as stroke, spinal cord or traumatic brain injuries, cerebral palsy, neurodegenerative and retinal degenerative diseases. “The institute is focusing on chronic neurological disability and neurorestoration or repairing the nervous system,” explains Christine E. Hughes, the Vice President of Institutional Advancement at BNI. “We don’t want to teach people how to use a wheelchair or crutches. We want to repair the patient’s nervous system so they can walk again.”

Petrone was lucky enough to be participant in a clinical trial at BNI in the Lower Limb Robotics Program with Amy Bialek, a physical therapist and Chappaqua resident conducting research on the use of robotics for spinal cord injury.

Petrone on the Today Show
PHOTOS COURTESY OF Jamie Petrone

Limited Options for Petrone

The clinical trial which Petrone enrolled in had strict criteria and Bialek screen hundreds of patients before she found a small subset of patients that met the criteria. Currently, for those that do not qualify, BNI is developing wellness trials to identify how to keep those with spinal cord injury fit and read for more emerging clinical studies. When you have a chronic condition like Petrone’s, physical therapy offers limited benefits and insurance often drops patients after several sessions.

“The doctors gave me an ultimatum. They said if you don’t get out of this wheelchair, you will get worse. So then the battle becomes how do I get out of this wheelchair?,” asks Petrone. “It is easy to lose hope. A lot of patients don’t have that mentality to push themselves.”

Robotics at BNI

It is no wonder that Petrone, a former high school softball player, dancer and swimmer is doing everything possible to win that battle and regain her ability to walk. Enter the EKSO, a wearable battery-operated exoskeleton that enables individuals like Petrone to stand and walk on level surfaces. The EKSO is just one of several therapeutic devices/robots that BNI is testing to help patients repair their nervous system. And while their clinics have robots to help restore function in other areas of the body for patients such as the wrist, arms and hands, the team at BNI is betting that a combination of a robot to train new functions combined with a drug to optimize new learning in the damaged nervous system will be the way forward.

“When Jamie is upright with the help of the EKSO, our data to date suggests that she is improving her mental health, her skin and bone integrity and her cardiopulmonary function. There needs to be a place that is leveraging the best in contemporary neuroscience to get people out of their wheelchairs,” urges Bialek. Essentially, the EKSO is helping Petrone rebuild neural pathways and her muscle memory through repetition. In the beginning, she had to look in the mirror when she used it but now she does not need it. “I see real progress with it.” Petrone’s situation is also unique in that she can’t take any prescription pain killers as many spinal cord injury patients do because of her Stevens- Johnson syndrome so exercise and restorative therapy offered at BNI really is her only hope.

Petrone with Amy Bialek
PHOTO BY Stacey Pfeffer

Petrone likes to keep active whether it be through adaptive sports such as waterskiing and biking or her performing career which is just as impressive as her determination to walk again one day. Petrone currently is the Executive Director & Founder of THISAbility, a Performing Arts Conservatory and Professional Theatre Company, cultivating inclusion in the arts. She is also the musical director for numerous schools in Westchester County through The Westchester Sandbox Theatre in Mamaroneck and Queens Theater in New York City, and teaches voice and piano privately.

She originated the role of Bonnie in the Off-Broadway show, The Healing, by Samuel D. Hunter (NY Times Critic Pick) and has also had recurring television roles on Madam Secretary and Law & Order SVU. In addition, Petrone was featured on the Today Show segment “Everyone Has a Story” where she sang and is also the subject of a documentary called And Seen which has won awards at film festivals and is continuing to play on the festival circuit.

The life of a performer is hard with Petrone auditioning for several roles but hers is ever more complicated by her disability and the therapy she requires to help her maintain her independent and active life. (Petrone lives alone, drives a car with hand controls and travels extensively.) Insurance wants her to receive treatment or therapies only in Connecticut where she resides. But Connecticut does not have access to state-of-the art rehabilitation therapies like those offered at BNI.

Besides auditioning for her roles and her various jobs, Petrone has also participated in a boot camp for spinal cord injury patients at the Kennedy Krieger Institute which is affiliated with John Hopkins University in Baltimore. When Petrone first went there, she was introduced to various robots to help her regain function. I felt like I was only getting compensatory therapy until then. I felt like I had wasted years of my life in this wheelchair. Why didn’t I know about these therapies?,” she asked. Petrone and medical experts agree that actor Christopher Reeve pioneered to change the paradigm of how spinal cord injuries are treated.

“There are a lot people that don’t know what is available to them. I wish that people knew about the advances in technology and what is happening more regularly now – these restorative programs could make a real difference in people’s lives,” Petrone noted.

Still Petrone wonders about what will happen to her when the study ends. “What happens next?,” she asks. “I see progress and I am killing myself to keep going – I have to keep going.”

New Grant Announced for Patients with Neurological Impairment

But there is some good news in store for patients like Petrone. Governor Andrew Cuomo just announced this summer a $5 million grant that will allow NeuroCuresNY, Inc. (NCNY) to conduct a two-year demonstration of its unique clinical trial network and process for testing drugs to treat disability due to neurological impairment. NCNY is a not for profit initiative and BNI is one of the founding members of it. The demonstration trial will focus on stroke, but set the table for combine the use of medication to repair the brain along with robotic training technology like the EKSO that Petrone used in her trial. The two-year trial will first focus on stroke patients but there are plans to evaluate treatments for disability due to other neurological conditions such as Alzheimer’s disease and spinal cord injuries like Petrone’s.

Commenting on the grant, Dr. Rajiv Ratan BNI’s Director said that “millions of Americans and their families struggle on a daily basis with the challenges from being disabled from neurological diseases such as stroke and spinal cord injury. The enduring lack of treatment options to significantly address the challenges that people with these neurological conditions face highlight the need for a novel, game-changing approach.”

Draw for Paws & Scarlett’s Rainbow Rescue: More Than $25K Raised for SPCA of Westchester To Date

August 24, 2019 by Stacey Pfeffer

“The Scarly Squad in Scarlett’s Garden shot on location at the Chwatko residence”. (L-R): Grace Frieder, Annabelle Fisher and Tate Shalov with Chwatko’s pets Ollie (dog) and Winnie (cat). PHOTO BY CAROLYN SIMPSON, DOUBLEVISION PHOTOGRAPHERS

Besides Scarlett Chwatko’s love of reading (see Bookmark Buddies story on page 27), she had a passion for art and animals. In fact, she often said “If I could, I would adopt every animal in the world I would”. Scarlett grew up with rescue animals and most recently had a beloved dog named Ollie and cat named Winnie.

Her love of animals and the SPCA of Westchester was set an early age. In fact, for her fourth birthday, she wanted an animal party and her mother, Robin Chwatko, inquired if the SPCA of Westchester in Briarcliff Manor could help with that request. Sure enough, they did and several rescue puppies and kittens were brought to the party so that her friends could play with them. Instead of gifts, Scarlett asked all guests to make a donation to the SPCA of Westchester.

Scarlett’s relationship with the local SPCA only deepened over time. She often served as a cage captain during adoption events held throughout the year at the shelter. Cage captains accompany the pets in their cages during adoption events and help keep them calm and comforted.

Scarlett with her dog, Ollie
PHOTO COURTESY OF ROBIN CHWATKO

Draw for Paws: Scarlett’s Idea

“Scarlett loved art and drawing and animals more than anything,” explains Robin. Scarlett came up with the idea of Draw for Paws. She was hoping that people would donate $20 to this SPCA of Westchester and in return she would draw their pets or favorite animal with the proceeds going directly to the organization. She created the original sketches, the concept, the Draw for Paws logo and the color scheme. She also wrote the mission statement for the organization at a “business meeting” with her mother at Starbucks.

Turning a Dream into Reality

For the holidays this past winter, Robin bought Scarlett the domain name for the website, drawforpaws.org and hired a graphic designer to help finetune her Draw for Paws logo sketch. “We have tried really hard to keep everything as close to her vision as possible,” said Robin.

Naming the Transport & Adoption Events

The SPCA of Westchester has a special relationship with an organization based in Mississippi called Homeward Bound. The SPCA works with them to transport hundreds of puppies a year from high kill shelters in the South to bring them to the SPCA here in Westchester to find their forever homes. These puppy adoption events held several times a year at the SPCA are hugely popular with many successful adoptions taking place but they are costly-roughly $50,000 a year to rescue, spay/neuter, transport and adopt out 300-400 puppies.

“When we knew Scarlett wasn’t doing well, I knew that people in the community would want to honor her. Although there are wonderful organizations that help kids with cancer, I knew that she would not want that to be her legacy,” explains Robin.

As Scarlett’s condition worsened, Robin reached out to the SPCA. Together they thought that naming the transport/adoption events in her honor would be an ideal way for the community to help an organization that Scarlett loved and was truly passionate about. Scarlett was always thinking about how she could help the animals at the SPCA. “She would donate all the blankets she received during hospital stays to the animals,” Robin recalls.

Cage captains, (L-R) Bryce Gell, Annabelle Fisher and Maddie Weiser at the inaugural Scarlett’s Rainbow Rescue event
Photo courtesy of Robin Chwatko

Brainstorming A Name for the Transports

When Robin and Scarlett first conceptualized Draw for Paws, Scarlett said she wanted to create every picture on her own. Robin suggested that Scarlett “employ” a few of her friends to help with the artwork. So she asked three of her friends, Annabelle Fisher, Grace Frieder and Tate Shalov (all rising fourth graders) to join her on this endeavor. These girls are all founding friends listed on the drawforpaws.org website.

After Scarlett’s passing, her friends came up with the name “Scarlett’s Rainbow Rescue” for the transports and decided to call themselves the Scarly Squad, but their involvement didn’t stop there. The Scarly Squad looked through Scarlett’s artwork and chose pieces that appear on the Draw for Paws website. They, along with Scarlett’s friends, family, and teachers also helped serve as cage captains at the inaugural Draw for Paws/Scarlett’s Rainbow Rescue adoption event held this past June at the SPCA in Briarcliff, which helped to raise more than $25,000 with funds that the community made in her honor at spca914.org/Scarlett and from contributions made on drawforpaws.org since the program launched. At this time, all contributions made on the Draw for Paws website will directly fund Scarlett’s Rainbow Rescue transport/adoption events.

Anyone Can Be an Artist

“We knew Draw for Paws was a way to directly involve Scarlett’s friends and family,” explains Robin. Robin admits that she was a bit hesitant initially and was worried that the people would not like the portraits drawn by the child artists but the response has been overwhelmingly positive from both the artists and the recipients of the artwork.

In order to become a Draw for Paws artist, an artist profile is needed. Artists are required to fill in an outline of a bunny that Scarlett drew named the Scarly Bunny and add a few details about themselves on the website. “Her friends are literally drawing WITH Scarlett- immersing themselves in her art by filling in this sketch. It is such a beautiful and special way to support her, remember her, and connect to her. It is also very therapeutic for so many of these kids who are feeling her loss.”

What’s Next for Draw for Paws

Robin hopes to expand the reach of Draw for Paws. Right now, the majority of the artists are local but they have had requests for portraits from Texas, New Jersey, Florida and California. “While our campaign will continue to fund Scarlett’s Rainbow Rescue, we encourage kids anywhere to start a Draw for Paws Campaign to help animals. For example, if an artist based in Florida wants to protect sea turtles, we will promote their campaign on our site and help them get up and running,” explained Robin.

Beyond Puppy Portraits

“The portraits are really incredible. People love them and want multiple drawings by different artists to collect them.” And the artists aren’t only drawing dogs, they’ve made portraits of cats, chickens, hamsters and dophins.

Currently, the artist is chosen randomly. “You can get a 5-year-old or a teen drawing your portrait,” said Robin but she is working to get celebrities and well-established artists on board in the future. “My favorite day of the week is sending out the orders – I feel Scarlett every time I send a portrait to a recipient. It is amazing to be able to honor her vision and spirit exactly as she wished.”

Draw for Paws at the Chappaqua Children’s Book Festival

Draw for Paws will have a special presence at this year’s Chappaqua Childrens Book Festival. Several illustrators will raffle original art as well as hold live “how to draw” demonstrations at the Draw for Paws booth.

Draw for Paws Portraits

German shepherd created by Rex, age 9, Manhattan

Windmill Triathlon Celebrates Its 15th Year on August 31st

August 24, 2019 by Stacey Pfeffer

It’s not too late for swimmers, bikers and runners to sign up and take part in the annual Windmill Triathlon on August 31st. Now in its 15th year, the race was originally conceived by Windmill residents “who saw a great opportunity to celebrate the community through having a low-key triathlon for its members and the residents of nearby communities,” explains Todd Zipper, a Windmill resident and one of the race organizers. “It has a great community vibe with lots of newcomers to triathlon. We also have practice days so people can get familiar with the course,” he adds.

Last year, there were approximately 80 racers. Some of them were part of relay teams, which is a good opportunity for individuals who want to be part of the triathlon, but are not quite ready to swim, bike, and run. “We are hoping to beat our record from last year in terms of participants, but generally, the race is not highly publicized,” notes Zipper.

The Windmill Triathlon is considered a Sprint triathlon with race distances of a 650-yard swim at Windmill Lake, a 14-mile bike ride that goes through a lot of Armonk and some of Bedford, and a 3.6 mile run all in the Windmill community. There are race prizes for various different race groups – women, men, Windmill resident, etc. The prizes are typically for gift certificates to various local businesses who continue to support the triathlon.

This year for the first time, all racers will wear timing chips so that official results can be recorded. In addition, the race organizers have also created a website for race registration – Runsignup.com/Race/NY/Armonk/WindmillTriathlon2019. The race is $84.80 for those who sign up prior to race day and $100 on race day.

The race always takes place on the Saturday of Labor Day Weekend, which this year is Saturday, August 31st at 7:30 am. The race begins at The Windmill Club, 10 Maple Way in Armonk. And for racers who have young children, babysitting is available on-site through one of the race sponsors, Breezemont Day Camp so that children can cheer their parents on all in a safe and fun environment.