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.
The Horace Greeley Scholarship Fund (HGSF) raised a record $186,000 during a March gala at the Mount Kisco Country Club.
PHOTOS BY HANNAH ROSENBERG
HGSF Gala co-chairs Rachel Rader and Cathy Hildenbrand attributed the sum to generous sponsors, donors and to the lively auction. “This year has also brought an increased number of applicants,” they added, “so we still have work to do to meet our needs.”
Brian O’Connor, a 5th grade teacher for the last 12 years at Seven Bridges, received the Ed Habermann Award. The HGSF lauded his interweaving of ‘CNN Heroes’ into his curriculum. His students have studied, connected with (sending out over 4,000 letters to dozens of heroes on five continents), and learned from these inspiring role models during dozens of Skype conversations and several Hero visits to Seven Bridges. Brian’s program was recognized and featured on the 10th Annual CNN Heroes Tribute live television broadcast in December 2016.
O’Connor’s dad, Jim, introduced his son, as “always a great leader, who led by example.” O’Connor, for his part, quipped, “I try not to screw them up in the ten months that I have them.” He described his goal of always working toward helping kids find their passion, “and see how they can use it to help other people.” O’Connor also enjoys time with his wife, Tara, and their three children–Alix, Jenna, and James. He loves coaching youth soccer, basketball, and baseball in their hometown of Montgomery, New York.
Ellen Miller, a passionate advocate of childhood nutrition, received the HGSF “Award of Distinction.” At Grafflin, Ellen chaired the Grapevine newsletter, Griffin magazine and the Health & Safety Committee. As part of a joint elementary school committee, she was a key architect of Grafflin’s “Eat a Rainbow” program which helped students select balanced lunches.
She chaired Nutrition Committees at Grafflin, Bell, and Greeley. In 2006, Ellen joined the Superintendent’s Wellness Advisory Committee, helping to create the district’s wellness policy and food guidelines. She spearheaded the initiative to have recess before lunch, helped refine food service offerings and pricing, enhanced the district’s “farm to table” focus and established healthier food and beverage choices. Ellenalso joined the Chappaqua School Foundation board in 2006. She worked on the Grants Committee for the majority of her nine-year tenure.
Ellen Miller’s two sons Harris and Trevor poked fun at their mom’s limits on both junk food and her allowance of twice a week red meat dinners. They said they admired her for ‘burning the candle on both ends” as she worked toward a Master’s degree in Food Studies at NYU.
Miller said she encourages kids to “dream big… and change the world.” She said she supports HGSF goals “because it’s heartbreaking when a child’s dream can’t be realized. “ “A child’s dream can be broken in the blink of an eye… Thanks for helping me make their dreams a reality.” — Grace Bennett
“The last 10 years running to raise awareness and money for the MMRF has changed my life. While this last Central Park run along with this documentary is the culmination of so much, we are not done. There is still no cure and we will keep fighting. I hope this documentary inspires other to get out there and do something for someone else. Together we can accomplish great things.” -Chappaqua’s Eric Gelber
Press Release from Governor Cuomo’s Office:
New PSA to Run in English and Spanish on 40 Television Stations, 100 Radio Stations in New York State Through Mosquito Season
State Has Distributed 7,000 Larvicide Tablets in the Downstate Region; All Local Zika Action Plans Have Received State Approval
Governor Andrew M. Cuomo today announced the launch of an aggressive public awareness campaign to educate New Yorkers on the dangers of the Zika Virus. The campaign’s launch marks the latest step forward in implementing the Governor’s comprehensive six-step action plan to combat Zika. Already, more than 7,000 larvicide tablets have been distributed to eliminate Aedes mosquitoes potentially carrying the virus. Additionally, New York City and the 57 other counties in New York have all received approval from the state Department of Health on local Zika action plans.
“New York State has put forward the nation’s most robust action plan to combat Zika and eliminate this deadly disease at its source,” Governor Cuomo said. “This public awareness campaign will ensure New Yorkers understand the threat Zika poses and how we can stop its transmission. By providing New Yorkers with the information they need, we can protect the public health and put an end to Zika once and for all.”
As part of the campaign, a public service announcement has begun running in English and Spanish on more than 40 television stations statewide and will continue for the duration of the mosquito season, which ends in September. Radio announcements, also in English and Spanish, were sent to more than 100 radio stations across the state and will run during the same timeframe.
Additionally, billboards and informational posters in subways and on buses will be utilized, digital advertisements will be displayed on travel-related websites and New York State has established a Zika Information Helpline (1-888-364-4723), as well as a dedicated website to provide information directly to residents.
New York State Health Commissioner Dr. Howard Zucker said, “The Department of Health is focused on reducing the risk of Zika virus transmission in New York State. Governor Cuomo’s six-point action plan provides local governments with the support and guidance necessary to address Zika and minimize its impact; and the public awareness campaign provides the information residents need to avoid the risk of Zika transmission.”
Zika is a mosquito-borne virus transmitted primarily by the Aedes aegypti mosquito in South and Central America. The virus can also be sexually transmitted. Although Aedes aegypti mosquitoes are not present in New York, a related species named Aedes albopictus is active in the downstate region. Scientists have not yet determined if Aedes albopictus – the type in New York – transmits Zika. There are 70 different species of mosquito in New York State and Aedes albopictus make up just three to five percent of the total population. Mosquito season in New York runs from April through September.
The greatest danger facing those who contract Zika is a birth defect known as microcephaly. This disease occurs in babies of mothers who are infected with the Zika Virus while pregnant. Zika may also cause a rare disorder called Guillain Barré Syndrome, which can cause temporary paralysis. The World Health Organization declared Zika a public health emergency of international concern in February.
Governor Cuomo’ Six-Point Zika Action Plan
1. Eliminate Zika at its Source. To eliminate mosquito breeding sites, the state will distribute 100,000 larvicide tablets throughout the target region. More than 7,000 tablets have already been distributed to municipalities in the downstate area.
Additionally, local counties, residents and business owners will be challenged to host clean-up days that effectively eliminate standing water. Residents can request tablets by calling 1-888-364-4723. One larvicide tablet lasts one month.
Aedes mosquitoes breed in containers with clean water. New Yorkers are encouraged to do their part by distributing larvicide tablets in permanent places of standing water, such as flower pots, and removing sources of standing water of all sizes, such as old tires, children’s toys, plastic containers and even clogged gutters – especially after it rains.
2. Aggressively Monitor the Aedes Mosquito with Special Trapping and Testing.
The state will aggressively monitor the mosquito population by deploying special mosquito traps to collect and test mosquitoes across the region to identify and respond to potential Zika transmission. The state will deploy traps in 1,000 locations per month.
Wadsworth Laboratory – already a national leader in Zika testing – will expand its testing capacity to accommodate the additional trapping. The state Department of Health will test 60,000 Aedes mosquitoes per month at Wadsworth in Albany.
3. Provide Free Zika Protection Kits to Pregnant Women. The state will distribute free Zika protection kits to pregnant women in the target region. The Zika protection kits contain educational materials, insect repellent, condoms and larvicide tablets to treat standing water. A total 20,000 kits will initially be distributed to healthcare providers throughout the region. A photo of a Zika protection kit is available here.
The Zika protection kits complement the state’s offering of free Zika testing to all pregnant women who recently traveled to a country with active Zika transmission or have had unprotected sex with a partner who recently traveled to or resides in a country with active Zika transmission. Men who recently traveled or reside in an area with active Zika transmission and have a pregnant partner should use condoms consistently and correctly or abstain from sex throughout the pregnancy.
The state Department of Health continues to offer webinars for health care providers on the Zika Virus and the care of pregnant women with possible exposure to Zika. Based on current information, infection with Zika at any point in the pregnancy could place the developing fetus at risk. The effect of Zika exposure at different stages of pregnancy on birth defects is not known.
4. Deploy Rapid Response Teams Wherever Local Transmission is Confirmed. The state will deploy rapid response teams wherever a case of Zika transmission by an Aedes mosquito is confirmed. The rapid response team will be composed of officials from the State Department of Health and the Department of Homeland Security and Emergency Services Office of Emergency Management to inspect surrounding areas, perform additional treatment and develop a local action plan.
5. Issue Emergency Regulations Requiring Local Zika Control Plans Upon Zika Confirmation. The Commissioner of DOH issued emergency regulations requiring all local health departments to submit Zika action plans with updated protocols for trapping, testing and control. The state Department of Health has approved plans in all 58 counties in New York State.
6. Launch Statewide Public Awareness Campaign. The state has launched an aggressive public awareness campaign targeting New Yorkers across the state, as well as international travelers from Zika-affected areas.
The public awareness campaign includes:
• PSA running on 40 television stations and 100 radio stations across the state;
• Multi-lingual posters, brochures and fact sheets to educate travelers about Zika;
• The Zika Information Helpline (1-888-364-4723); and
• A website dedicated to the Zika Virus.
To ensure travelers take the necessary precautions to protect themselves against Zika, the state will work with airports in the target region and across New York State to disseminate print materials and broadcast public service announcements to passengers.