The 9th annual Think Fit For Kids event, which supports pediatric brain cancer research, took place once again at Club Fit in Briarcliff on March 3rd. As always, the event brought the community together for a fun-filled day of fitness, while raising funds to support novel pediatric brain cancer research. Since the 2018 event, A Kid’s Brain Tumor Cure Foundation has merged with the Pediatric Brain Tumor Foundation, the largest pediatric brain tumor foundation in the country, in order to serve more families and find more promising treatments for children battling brain tumors. This merger would not have been possible without the success of Think Fit For Kids, which has raised close to $2 million over the last nine years. Think Fit For Kids funds are currently funding two clinical trials at Memorial Sloan Kettering Cancer Center, and an on-going research project at the Massachusetts General Hospital, as well as the first ever privately funded pediatric brain cancer research project at the National Cancer Institute. The non-profit is excited for this opportunity as it finally gives pediatric brain tumor research the recognition it deserves from the government. “None of this would be possible without the community support of the annual Think Fit For Kids event. The community’s generosity has given hope to kids battling brain tumors who have run out of treatment options,” noted Kim Gilman, a Chappaqua resident and co-founder of the Think Fit For Kids event. To find out additional information or to donate, please visit thinkfitforkids.org.
Usually ten-year old Danny McManus, a fifth-grader at Wampus Elementary School, is outside with a ball and lacrosse stick. Standing 5’4” tall, he towers over most of his friends, and is a tireless force of nature. This past October, while Danny was competing in the Tri-State 91 Lacrosse tournament, he wasn’t keeping up the way he normally would. Danny’s parents sensed something was wrong, took him to the pediatrician, and within 24 hours was admitted into the hospital and diagnosed with leukemia–a form of blood cancer. When I see people in town now, Deidre McManus, Danny’s mother says, “I realize we have changed people by sharing what we are going through.” The subsequent outpouring of support from family and friends, neighbors, doctors, teachers and clergy tells a heartwarming story about the generosity of Armonk’s community.
When Mrs. McManus and her husband Francis were told that they needed to bring Danny to the hospital, they had to find someone to take care of their older son, Colin, who is in 7th grade. Their neighbors Drs. Erik Cohen and Maude Lemercier were already friends, but have become like extended family, giving Colin an extra set of adults to rely on, and helping the McManuses to interpret the constant stream of medical information.
That first night, while Danny was being evaluated in the hospital, Deirdre thought of her lifelong friend, Karen Wolownik, a Nurse Practitioner and Nurse Leader in the Pediatric Blood & Marrow Stem Cell Transplantation Unit of Maria Fareri Children’s Hospital at Westchester Medical Center. Within a few hours, Karen received an alert from the hospital about Danny. She called Deirdre right away–Karen’s expertise was precisely what they needed. Karen was confident that Danny was in the right place to deal with this horrible disease.
It’s taught us a lot about cancer–how it can affect anyone, even kids… and that even with cancer Danny is still just Danny—my friend. He has shown us that having a strong growth mind-set helps get you through the things in life. —Shane Gordon, Danny’s friend
Danny’s AML Treatment
The first line of treatment for Danny’s acute myeloid leukemia which is commonly called AML is potent chemotherapy, often followed by a stem cell transplant. The Children and Adolescent Cancer and Blood Disease Center at Maria Fareri Children’s Hospital has become a center of excellence for such therapies. The center was established in 2011 when Westchester Medical Center hired Dr. Mitchell Cairo from Columbia University to lead it. Dr. Cairo is a world renowned specialist in stem cell biology, molecular oncology and experimental immunology and a long-time Armonk resident.
In addition to the expertise provided by Dr. Cairo and his team, the McManuses have been overwhelmed by the competence and compassion of the staff at Maria Fareri Children’s Hospital. “They’ve worked with Danny every step of the way to always make sure he understood what to expect during every procedure.” For example, before Danny had a port connected to deliver chemotherapy, the Child Life Specialist explained the procedure by letting Danny feel the port and see how it would be used with the help of a doll. Then, during the chemo, Danny needed an NG tube (a nasogastric tube) to deliver nutrition directly to his stomach. The physician working with Dr. Cairo, Jordan Watson, MD, asked one of the residents to demonstrate for Danny what it would be like and, right in front of Danny, inserted a tube down Jordan’s nose and throat! She said, “I’ve always wanted to know what it felt like!”
Community “Shavees” Support Danny
As if that wasn’t enough, last month Dr. Watson asked the McManuses if Danny would be part of her team, raising funds to support the St. Baldrick’s Foundation, which is dedicated to funding research for childhood cancers. Danny’s family and friends created The Mighty McManus Team, Dr. Watson and her fiancée shaved their heads alongside nine of Danny’s friends, and together they raised nearly $30,000. Danny’s friends, Shane Gordon and Michael Bellantoni, are two of the “shavees.” Gordon says, “The reason we all shaved our heads was because he really likes his hair, so we thought it would be good if we let ours all grow back together.” In addition to funding research, the McManus’s relatives created a GoFundMe campaign to lend a hand while Deirdre and Francis take time from work and manage the costs of Danny’s care.
A Turn for the Better
The next step in Danny’s treatment was a stem cell transplant. Statistically, 1 in 4 siblings have markers indicating they are a good match and won’t be rejected by the recipient. In Danny’s case, they were thrilled to discover that his brother, Colin, is a 100% donor match for Danny, making a stem cell transplant an ideal option. On January 4th Colin underwent a 3-hour operation–drawing bone marrow from both hips to obtain stem cells to populate Danny’s bone marrow. Since then, Danny has been improving every day, and although he has no immune system of his own yet, he was able to come home from the hospital after 133 days when they celebrated Danny’s 11th birthday on March 13th.
The McManuses are touched by the efforts made by every church and synagogue in the community. Melissa Gordon, who attends St. Patrick’s with the McManuses, says that since Danny’s diagnosis, a remarkable number of children and adults have filled the church on First Fridays, when the Church holds special services for adoration and prayer. At school, Danny’s teacher, Mrs. Marchesini, has kept Danny as involved as possible, and in the meantime made t-shirts, videos with messages from his classmates, and a video of the whole class singing Happy Birthday to Danny.
Shane Gordon and Danny look forward to getting on their bikes again and exploring the outdoors. When I asked Shane how Danny’s illness has affected him and his friends he said, “It’s taught us a lot about cancer–how it can affect anyone, even kids… and that even with cancer Danny is still just Danny–my friend. He has shown us that having a strong growth mind-set helps get you through the things in life”.
For those who would like to help, both the Maria Fareri Children’s Hospital and The St. Baldrick’s Foundation accept donations. In addition, the McManuses recommend registering with BeTheMatch.org to help someone in need of stem cells.
When a person develops leukemia, the body makes more white cells than it needs, crowding out the normal cells and affecting the way major organs work. Eventually, there aren’t enough red blood cells to supply oxygen, enough platelets to clot the blood, or enough normal white blood cells to fight infection.
I’M EIGHT, and standing by my bed is an actual grownup in iguana-themed pajamas: Aunt Jane.
“Wakey-wakey, ‘Lil Wingman!’” my weekend guardian commands. “What’re we doing today?”
“Ummmm…pajamas, TV and Häagen-Dazs all day long…and NO TELLING Mom!»
“You’re on, kid.”
We spend the next 48 hours sugar-high and stoked on back-to-back “Star Wars” flicks.
Jane’s officially the Pied Piper of my childhood.
TEN. It’s my birthday, and Jane brings a record–old to her, new to me.
She and my dad start singing, dancing, playing air guitar, pulling me in. The music swells like an ocean, its hypnotic waves–love, loss, freedom–all new to me.
And time feels…infinite.
“Wait’ll you see Springsteen!” exults Jane (a Jersey girl). But I already know: I’m Born to Run.
THIRTEEN. My Bar Mitzvah is eclipsed by shocking news: Jane has pancreatic cancer. I can’t even fathom what I’m Googling: a 7% survival rate??
Jane starts chemo; I start high school. Immersed in chemistry, biology, statistics, I find no antidote to fear. I do find PanCan (Pancreatic Cancer Action Network). Inspired by its motto—“Wage Hope!”—I launch a website that’ll tell Jane’s story while raising funds and awareness, team-jane.com. A bashful kid, I’m starting to…Run. Because maybe time’s not infinite after all.
FOURTEEN. Team Jane flourishes online and off as I coordinate supporters for a 5K. Jane walks nervously alongside me, wearing a brilliant smile. We raise $3K, far exceeding our goal. Afterwards I phone her, bursting with plans for our next event. She’s weirdly subdued. “Wingman,” she confides, “it was the worst day of my life.” First I’m stunned, wounded. Then I realize I’ve been given a trust. My Pied Piper’s yanked me past childhood and into the abyss where only she and her tumor live.
“Heyyy…c’mon,” I stammer, helpless for words of my own, “y-y-know what Bruce says, ‘No retreat/no-ohhh sur-ren-derrr…’”
“Of course!” she responds, playful again. “And we’re a team now, thanks to…my captain!”
Her new nickname for me–“The Captain”–fuels my shaky-but-growing belief in myself.
SIXTEEN. Brooklyn, Delaware, Chicago–at PanCan Walks nationwide, Dad and I represent Team Jane. Jane, despite cancer’s spread, keeps fighting. I keep coordinating, blogging, fundraising. I’ve raised nearly $150K, and with it, my confidence.
I summer-intern at PanCan. It’s intimidating–lobbying on Capitol Hill, being interviewed on TV, addressing hundreds at 5Ks. Most rewarding is creating “Voices of Hope,” a platform for teens to connect with survivors. Hope: it’s the only thing that quells the fear in kids like me, racing against time. Except…it’s not enough.
On 9/24/16, I cling to the last remaining beeps of Jane’s monitor. The only other sound in her crowded-but-hushed hospital room: Bruce, serenading from somebody’s phone. She can’t speak anymore but recognizes me, still tries flashing that smile that launched a thousand crazy adventures.
I can’t speak either, because there are no more words. Together we’d fought for life/love/family/all-day PJs/nonstop ice cream/Springsteen/a freaking CURE.
Anything but this statistic.
SEVENTEEN. Heavy-hearted and lead-footed, I summon Jane’s mantra: “You must do the thing you think you cannot do.” I intern at another pancreatic cancer organization, CodePurple, where massive amounts of data are the chief weapons against this monster. Travelling the Northeast, entrusted with a self-designed project, I interview leading clinicians and researchers.
It’s illuminating. Progress, I’m learning, is fueled by passion and data, like life encompassing both sugar-highs and heartbreak. I grapple with paradoxes: Jane’s eternal childlike persona and her adult hell. And I resume Running–not “away” from anything, but towards everything.
My momentum is now for the 65,000 Americans battling this cancer and the 50,000 who’ll be diagnosed next year. For Jane and all the others whose races have ended. And for my own self; for the ability to marry fear with hope, hardship with joy–to fill finite hours with infinite fun. Blessed with this rare gift, my aunt took on the world. Today, armed with a Häagen-Dazs pint and a playlist, I plan on doing the same.
Walk down King Street in Chappaqua, NY and you’ll spot tons of local businesses. Be it a clothing store, nail salon or a jewelry store–they’re all over. Many of these businesses have been around for decades and have well served the residents of the area. However, these businesses are not just good for selling products to locals, but many also grant significant support to various charities. Desires by Mikolay, one of the jewelers in town, is well known for its support of the Society for the Prevention of Cruelty of Animals, or better known to many as the SPCA located in Briarcliff Manor.
Scott and Tara Mikolay, the powerhouse husband and wife team that owns Desires, became involved with the SPCA in 2008 because of their joint passion for animals. The couple has had six of their own rescue dogs over the years, ranging from an Australian Cattle Dog to an American Bulldog, so the idea of supporting a charity to raise awareness and support for rescue animals was a “natural fit,” according to Tara.
Tara and Scott care so deeply for the SPCA that they wanted to expand their contributions beyond the personal level by getting their business involved. Since 2008, they have hosted Shop for a Cause, a charity shopping event where they donate 10% of the night’s proceeds to the SPCA. This year, Desires had record success, raising over $4,000 over the course of the evening. The night was so successful because of the staff’s dedication to the cause, as well as the love and support brought in by each client.
In total, Desires has raised more than $45,000 for the organization through the annual holiday event as well as by offering “Gifts with Impact” throughout each year. Tara explained that it is incredibly useful to have “a platform in one of the most generous towns in the country.”
Although shopping for jewelry is one great way to help the SPCA, there are many other ways to get involved. The SPCA is always in need of committed volunteers and they have an Amazon wish list with products they need for the shelters. Even something as simple as liking the SPCA on Facebook can make a difference and according to Tara, “your impact, however big or small, is so meaningful.”
Tara explained that the SPCA is more than just a rescue organization. Their programs range from taking tireless care of each dog they take in to working to change animal abuse laws and education.
Tara and Scott’s connection to the SPCA runs deep. “Rescuing dogs for us is the only option. There are so many dogs in need and we have been blessed with the love of all of our dogs,” Tara said. The couple is even on the lookout for a companion for their current dog, Gus, and they will certainly be looking to rescue. With more than 1,300 orphaned animals rescued at the SPCA last year alone chances are Gus may just find a “furry friend” there.
By Matt Smith
You know how the saying goes: “If at first you don’t succeed, try, try again.” While these words are no doubt sage advice for anyone wishing to achieve any goal, you can bet they’re especially pertinent to Chappaqua resident Eric Gelber, who will take his third stab at running 200 miles on September 16th through New York City’s Central Park to support and raise funds for the Multiple Myeloma Research Foundation.
Gelber began running independently for the cause in 2007, to raise money in support of a friend who had been diagnosed with the disease, an incurable blood cancer that has one of the lowest five-year relative survival rates of all cancers. “It started out with a marathon in New York City,” he explains, “and over the years…sort of built up and [I] started running longer races.”
The idea for the Central Park event arose in 2011, when “I did a solo run through the Catskills,” which he completed in 45 hours, beginning in Oneonta and ending 175 miles later at his parents’ home in Suffern. “It wasn’t a [official] race, though,” he explains. “It was just [of] my own [accord] to raise money…and attract some more attention [to the cause].” However, “when I got there [to the finish line], there were 50-60 people–I could hear them cheering from down the road as we finished and I just knew right then that we were doing something that was making a difference.”
And he capitalized on that feeling. The following year, he ran the Badwater Ultra-marathon in Death Valley, CA, “but the plan was to come back in 2013 and do something in New York City.” And, that September, as planned, the epic Central Park challenge was born.
Gelber initially pledged a goal of 200 miles, which he would achieve by running continuous 6.1 mile loops around Central Park. Though he hasn’t made it quite yet (his previous attempts in 2013 and 2014 covered 164 and 176 miles respectively), after a year off in 2015, during which he returned to Badwater–and raised a whopping $140,000 for the MMRF–he’s excited to be back in New York City for another shot at the 200-mile goal. “8 a.m. [on] September 16th, I’ll be out there,” he says, proudly, noting he’ll begin up at Engineer’s Gate on the East end of the park, “and I’ll [aim to] finish sometime on the 18th.”
If you’re inclined to support Gelber in person, “we’re really easy to find out there,” he says, noting the “big orange MMRF tent” at which he and his team will be situated. “We also have a [Facebook] page called ‘Just a Mile to Go,’” he adds, “where we will post information on how you can actually register and sign up to come run a loop with me, [or] make a donation, or set up your own fundraising page.”
If you can’t yet decide how you’d like to contribute, you can always simply show up at the event and take it from there, which Gelber notes “a lot of people do.” (They’ll also live stream the run straight from the Facebook page as well.).
Whichever way you support, Gelber hopes you do take note of the cause, as it’s near and dear to his heart. To that end, though his friend, Anita Sorrell, unfortunately lost her battle in 2012, his involvement with the MMRF has allowed him and his wife to engage and connect with others who have been affected both directly and indirectly by the cancer. “Sometimes when you lose the person you’re fighting for, your first reaction–which certainly was mine–is ‘What’s the point?’” Gelber explains. “But after taking a step back and thinking about where we were on this journey, my wife and I thought it was important to keep fighting for everybody who’s still with us. So, we do it for them.”
And while it isn’t always easy waking up to a daily 4:30 a.m. alarm and training intensely before heading off to a full-time job, Gelber acknowledges that the strides made in collecting donations and funding further research make it all well worth the effort, stating: “I know that what I am doing is making a real difference in the lives of [multiple myeloma] patients.”
But that’s not to say he does it all solo. Wholly recognizing “there’s no way I could do this on my own,” he wishes to extend sincere thanks to the entire staff at the MMRF for all their help and assistance, as well as his many close friends and family, both here in Chappaqua and in other neighboring towns. Above all, however, he thanks his wife, Tani, and three children, Jared, Kyle, and Isla. “Their support is unwavering,” he says, with a smile. “It’s been amazing.”
In closing, Gelber, who describes himself in three words as “determined [and] mentally tough,” offers a few encouraging words to those “adventurers”–men, yes, but also people of all ages and gender–who might be looking to pursue a similar goal. “I think you just gotta commit,” he says, “and not just to the end goal, but to the process of getting there.”
Citing the multiple myeloma patients and their “incredible mental focus, commitment, and [the fact that they’re] willing to fight,” he reminds the dreamers: “Don’t let anything stand in your way. You gotta follow through, make promises to yourself and keep those promises. I remind myself of the promises I make to myself each night, and I get up and do it. Take one step at a time, and you’ll reach your goal eventually.” And hopefully, if you’re anything like the tenacious Gelber, when you do, the world will be better for it.
For more information on the Multiple Myeloma Research Foundation, including how to join Gelber in his efforts and/or donate to the cause, please visit www.themmrf.org.