Star Power

Every year the Greenwich International Film Festival honors those who use their influence to bring about very real change in the world. Two of this year’s trio carry the cache of international stardom, and one has garnered the local spotlight due to his courage and candor. We were privileged to sit down with Christy Turlington Burns, Renée Zellweger and the fearless head of Greenwich Country Day’s Lower School, Andrew Niblock, to discuss their passion projects.


MOTHER WARRIOR

GREENWICH INTERNATIONAL FILM FESTIVAL CHANGEMAKER HONOREE CHRISTY TURLINGTON BURNS HAS CATWALKED 1,000 MILES AND GRACED 500 MAGAZINE COVERS, BUT THE FASHION ICON’S GLOBAL MISSION TO MAKE PREGNANCY AND CHILDBIRTH SAFER FOR EVERY MOTHER IS WHAT TRULY MAKES HER A MODEL CITIZEN

It is a warm February morning in Tanzania. Mt. Kilimanjaro’s snowy head looms in the distance. On a wide dirt road flanked by tangled trees and brush, Christy Turlington Burns is running—and no one can stop her. Kicking up dust with Christy are twenty women from Every Mother Counts, the nonprofit organization she founded in 2010. Shoulder to shoulder, they are running the Tanzania Half-Marathon, or “Kili,” as locals call it, among thousands of participants representing forty nationalities.

The 13.1 mile stretch is a doable challenge for this fit group of women, but imagine trekking nearly double that distance while pregnant or in labor. That’s the average distance women must travel on foot to get emergency obstetric care in Tanzania, and it is why Team EMC is running. “We want to improve access to essential maternity care and raise awareness about one of the biggest barriers mothers face in accessing health care here and around the world, which is distance,” says Christy. “We raised nearly $150,000 through this run, which is an incredible feeling.” A peek at Christy’s Instagram, featuring post-race pics of Americans and Africans donning medals and holding flowers, is a window into the sort of sisterhood she is forming globally.

“Throughout her life, Christy has given a voice to those less fortunate,” says Wendy Stapleton Reyes, founder and chairman of the board of the Greenwich International Film Festival. “As a mother, I am profoundly grateful that she has helped to ensure that every mother, regardless of where she lives, receives proper medical treatment. Christy is a bright and beautiful light in the world.”

“It is always an honor to be recognized for this work,” says Christy. “I am especially grateful to the Greenwich International Film Festival for showcasing Every Mother Counts. Story-telling is a big part of the work we do to educate the public about a global tragedy. The film we will screen at the festival is part of a short-film series called Giving Birth in America, in which we examine challenges and barriers American women face when in need of essential maternity care. The segment we will share looks at maternal health care in New York, so I hope the Greenwich community will relate and be inspired to get involved in our community.”

NO WOMAN, NO CRY
Christy’s first foray into film was in 2008, when she began production on her directorial debut, the documentary No Woman, No Cry. It follows four at-risk pregnant women and the devastating effects of poor maternal care in Tanzania, Bangladesh, Guatemala and the U.S. Yes, the United States—in fact, we rank a shocking sixtieth in the world in terms of maternal health, and with nearly 8,000 maternal deaths annually, a full 3 percent of global maternal deaths occur in this country. “We lose two women per day here in the United States,” adds Christy, “and we are one of only thirteen countries with a rising maternal mortality rate.”

The impetus for the film was Christy’s own near-death experience: a postpartum hemorrhage within an hour of delivering her daughter, Grace, now thirteen. It wasn’t until Christy was pregnant with her son, Finn, and traveling with her mother, María, through María’s native El Salvador, that Christy had an epiphany. “While visiting a clean water project in a remote village, I realized that had I given birth there with Grace, I could have died,” she says. “More than 300,000 girls and women die every year from complications related to pregnancy and childbirth, and postpartum hemorrhage is the leading cause of maternal deaths around the world. A woman can bleed to death in under two hours.” Once Christy wrapped her head around these devastating numbers, she felt compelled to roll camera.

While she never intended to start a foundation when she began No Woman, No Cry, it was a natural next step. “It was only when we were in the final stages of the edit in 2010 that we started to build a website as a resource for audiences to learn more and do more if they were inspired to do so after watching the film and learning the facts,” she explains. “We made an impulsive decision to give it a name and Every Mother Counts was born. After a year or so of traveling the world with the film, it became clear that people wanted to get involved, so the organization evolved.”

In 2012, EMC became a registered 501(c)(3) and started to build a portfolio of grantee partners around the world who are working to improve access to care. “Today we support eleven grantees in nine countries, including the U.S., Haiti, Guatemala, Tanzania, Bangladesh, India, Uganda, Nepal and Syria,” Christy says proudly. “We have provided over 3 million dollars in grants and impacted more than 500,000 lives.”

WISHES GRANTED
Imagine health care attendees trying to deliver a baby in darkness. One of the most game-changing grantees to work with Every Mother Counts is We Care Solar, which installs Solar Suitcases with a complete solar electric system, battery chargers, LED headlamps and a fetal Doppler on the walls of remotely located clinics. Since 2014, the EMC community has provided forty-four solar suitcases in Malawi and fifty in Tanzania.

“On this recent trip to Tanzania, we had a group of supporters with us who all participated in the training and supported the installation,” says Christy. “Watching the staff in this clinic enthusiastically trying everything out was just awesome and reaffirmed the importance of these types of innovative solutions. The midwife put the fetal Doppler to work immediately and was so grateful to have supplies like these available.”

Other grantees are addressing the hurdles of health-care worker training and education to ensure safe pregnancies and deliveries, as well as transportation to facilities. In Haiti, for instance, midwives are trained to deliver babies in a pink baby-mobile that travels to rural areas far away from health-care facilities. In India, lawyers and activists are being trained to advocate for better maternal health and flag violations. In Florida, childbirth education is being pro-vided to low-income mothers at risk. “This is a solvable problem and many solutions are quite obvious and simple, even low-cost,” says Christy. “However, it does require many different groups and individuals working together and a functioning health system to sustain them.”

Thankfully, strides in technology are helping to create more avenues for awareness. “Mobile health has made a tremendous impact by educating women and linking them to health care throughout their pregnancies,” Christy explains. “There are also some great medical devices out there that are empowering health workers and allowing them to collect and analyze data in the field.”

But advancements like these require steady growth to thrive. “Many of our grantees are small, community-based ones, so they need capacity building support and we also want to support that when we can,” she says. “We are still quite small but we are nimble and have learned so much in a short time. I hope to grow our team incrementally over the next couple of years so that we can increase our ability to impact lives.”

CHARGING ON
For Christy and her husband of fourteen years, award-winning writer/actor/director Ed Burns, impacting lives continues at home in New York City. “My daughter has traveled with me on Every Mother Counts trips to the field, and I am excited to continue to educate and engage her and her peers to learn and do more,” says Christy. “My son is also aware but a bit younger, so in time he will also be joining us, I hope. It is crucial for boys and men to get involved in issues like this. It takes two to make a baby, and understanding our bodies early on and how they work is a critical step to solving this problem down the road.”

In the meantime, along that road, there will be more running. “My next marathon will be the Berlin Marathon in September,” Christy says brightly. “Hopefully Tokyo in 2018, and I will return to run the Kilimanjaro Marathon again in 2019.”

The more you talk to Christy, the more you realize that for her, there is no finish line, because the fight is fierce and ongoing. “The good news is, almost all of these deaths are preventable and that’s what motivates me and my team at Every Mother Counts every day,” she says. That, and the unbreakable bond her organization has created on the most basic human level. “I love to connect with women around the world, that’s what brings me happiness,” says Christy. “Motherhood is truly a sisterhood and talking and sharing our joys and sorrows is a beautiful thing.”

To learn more visit everymothercounts.org.


ALS HEROES: IN HOLLYWOOD AND AT HOME

ONE IS AN ACADEMY AWARD WINNER, THE OTHER A BELOVED EDUCATOR IN OUR OWN BACKYARD. BOTH ARE BRINGING AWARENESS TO ALS—THE FORMER AS AN ADVOCATE, THE LATTER AS A FIGHTER WHOSE POSITIVITY DEFIES HIS DIAGNOSIS. BOTH WILL BE HONORED AS GIFF CHANGEMAKERS FOR THEIR GRACE AND GRIT IN THE FIGHT AGAINST ALS

Renée Rises to the Challenge

She had us at hello, but knowing the difference Renée Zellweger is making in ALS advocacy has us falling even more in love with her. “Renée has shown her incredible character in the way she has supported her friend Nanci Ryder throughout her battle with ALS,” says Wendy Stapleton Reyes, founder and chairman of the board of GIFF, who will present Renée with a Changemaker Award at the gala at l’escale on Thursday, June 1. “She has used her platform to raise funds and awareness for people all over the world facing the same battle. Thanks to Renée, we may be just a bit closer to a world without ALS.”

Here, the Oscar-winning actress shares her inspiring story of friendship and support.

GM: WHEN YOUR DEAR FRIEND, HOLLYWOOD PUBLICIST NANCI RYDER TOLD YOU SHE WAS DIAGNOSED WITH ALS IN 2014, WHAT RAN THROUGH YOUR MIND?
RZ: It’s difficult to recall that day… she called and I got in the car. I cried on the way to her house. That’s all I remember. Despite her diagnosis in the midst of the Ice Bucket Challenge phenomenon, most of us among her extended family of friends were unsure what exactly ALS was. We circled the wagons of support and an extraordinary team of ALS specialists who could help her on the journey forward came into her life. That time was filled with so much emotion, many questions, and seeking understanding and answers and trying to learn how to be a good friend under those circumstances.
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GM: HOW DID THE TWO OF YOU FIRST MEET?
RZ: We began working together in ’96 and were always together, around the world and back, as professional partners, and in the meantime experienced laughter, adventure, ridiculous situations, disappointment, birthdays, new love, heartbreak, triumphs…just life. I didn’t notice when work became friends, became family. She’s one of my dearest friends and I love her.
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GM: TELL ME ABOUT POST-ALS NANCI WHO COMMUNICATES VIA MACHINE. WHAT HAS CHANGED IN TERMS OF HER SPIRIT? I HEARD SHE STILL PROUDLY CURSES LIKE A SAILOR.
RZ: She does indeed have some pretty fantastic pre-set sayings on her speaking device, and she grins with a joyful twinkle as she taps them to repeat in certain sequences. She’s the same wonderful, funny, spirited gal…but perhaps now, even more extraordinary. Pre- and post-cancer, pre-ALS and present, Nanci is an original! She’s wickedly funny, naughty in the best way, and her laughter is magic. Her business savvy and instincts are remarkable. She’s the first to cry when her friends are hurting and first to cheer their successes. She loves dogs and animals. She is unique in every respect, one of a kind. Her beauty, wit, humor, her voice, her story—I’m so grateful for the friendship we share.
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GM: WHAT FRUSTRATES YOU MOST ABOUT WATCHING SOMEONE YOU LOVE SUFFER WITH ALS?
RZ: As a person who loves someone with ALS, it’s difficult to accept that there’s so little to be done, that there are so few answers regarding the cause and pattern of progression; and though there are certain medications available and systems in place to help to temper symptoms, since its discovery in 1869, there is still no treatment to stop the progression of the disease.

The good news is that in this moment of simultaneous advancements in science and technology, and with the unprecedented financial bolster of Ice Bucket Challenge funds, there’s never been more momentum and promise in the field of ALS research. The goal is to encourage that momentum to perpetuate and it seems the best way to achieve that is to keep ALS in the conversation. Folks can’t support something they don’t know about.
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GM: WHAT CLICKED FOR YOU THE MOMENT YOU DECIDED TO MAKE A DIFFERENCE FOR THIS DISEASE?
RZ: I don’t think there was a particular moment. Nanci got sick and we got busy. When Nanci was first diagnosed, her team at Cedars Sinai gave us a flier announcing the ALSA West Coast Chapter Annual Fundraiser Walk. Nanci said she wanted to join the walk, so I signed us up and reached out to friends and anyone who may know or know of Nanci.

The response was an unbelievable rally of Nanci’s friends, associates and folks from the public relations world on both coasts who generously reached out to their contacts and clients to ask for support on Nanci’s behalf. Talk about connected! Never mind politicians, if the publicists of the world got together … ha! The efforts are just friendship. In the meantime I’ve gotten to know a lot of people within the ALS community, and I’m awed by them and their support circles. If speaking publicly about ALS may raise awareness about the disease and hearten some folks to contribute support for research to find a cure, it’s an opportunity that I’m very grateful for.
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GM: WHAT DOES IT MEAN TO YOU TO BE HONORED FOR YOUR ALS ADVOCACY BY GIFF?
RZ: I’m really happy for the opportunity to brag about Nanci and talk about her experience with ALS. I’m hopeful sharing her story will be helpful to anyone facing an ALS diagnosis and might inspire people to support ALS organizations and research. I appreciate the Greenwich International Film Festival’s focus on this disease. We can’t stop Nanci’s ALS today, but we can talk about it, and that’s an invaluable step on the path to finding a cure.
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GM: YOU RECENTLY MADE YOUR RETURN TO THE BIG SCREEN AFTER A SIX-YEAR BREAK. WHAT WAS GUIDING YOU TO TAKE THAT TIME OFF, AND HOW HAS IT HELPED YOU PERSONALLY?
RZ: Working in entertainment is all-encompassing, and unless you’ve learned how to manage giving your personal life necessary attention, it erodes. I needed to learn how to find balance, to take care of myself and to learn and do things unrelated to my profession in order to grow as a person. I’ve learned and grown a lot. We’ll see what comes of it.
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GM: THINK YOU HAVE ANOTHER BRIDGET JONES FILM IN YOU?
RZ: Very selfishly, I hope so! I love Bridget. The experience always makes me laugh and I’d love an opportunity to revisit Bridget’s world. Watching Bridget navigate motherhood seems pretty fertile ground for heart and humor. Fingers are always crossed that Helen Fielding might imagine another Bridget adventure.
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GM: WHAT IS YOUR DEFINITION OF HAPPINESS AND A LIFE WELL-LIVED?
RZ: Love, be loved, learn, give, travel, chase your bliss, do what you dream, get a dog, no regrets.

To learn more go to alsfindingacure.org or alsa.org.


CLASS ACT: ANDREW NIBLOCK

To know Greenwich Country Day School’s Head of Lower School, Andrew Niblock, is to be charmed by him, from his effortless way with students to the tiny tiger he sports in place of a pocket square to show school pride. Andrew, who was diagnosed with ALS nearly one year ago, has been a leader in education within the community, says Wendy Stapleton Reyes, who will be honoring him with GIFF’s first ever Community Changemaker Award. “Andrew is tackling this diagnosis with strength and grace and has inspired us to fight alongside him. He will continue to educate all of us as he faces this battle.”

We caught up with Andrew to learn more about his journey.

GM: WHAT DID YOU KNOW ABOUT ALS BEFORE YOU WERE DIAGNOSED?
AN: Prior to my diagnosis, my greatest point of knowledge with ALS was through Steve Gleason, a New Orleans Saints icon who was diagnosed with ALS six years ago. We had lived in New Orleans for more than a decade, and were deeply embedded in that community. Steve’s very public journey rallied a city behind him. His foundation, Team Gleason, is one of the organizations making a real difference in the ALS community. I, like so many, also took part in the ALS Ice Bucket Challenge in the summer of 2014. It is a bit surreal to watch that video now. I am sincerely grateful to everyone who participated then, as that initiative has raised $200 million over the last three years for ALS research. It also raised global awareness for this disease, which may be even more important than the funding in the long run.
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GM: WHAT WAS THE ROAD LIKE LEADING UP TO YOUR DIAGNOSIS?
AN: There is no definitive test for ALS. It is a diagnosis made largely through a process of elimination. Like many people with ALS, we had spent a few months prior to diagnosis trying to sort out what was going on. I am grateful for doctors who were open and honest with me from the start. They were so helpful to my family and me throughout, and we moved quickly.

When my wife, Eliza, and I got a definitive ALS diagnosis from Neil Shneider at Columbia last July, it certainly felt like my feet had been taken out from under me. Everybody knows the first two paragraphs in any description of ALS, and they are pretty dire. Fortunately, our doctors’ and our own mindsets moved very quickly to doing everything we could to proving the typical description of ALS progression wrong. We are positive, proactive people by default, and that hasn’t changed. It really helps that I am surrounded by positive, proactive family and friends in this community and beyond. It makes it easier to push forward with hope.
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GM: HOW DO YOU EXPLAIN TO YOUR CHILDREN WHAT IS HAPPENING? WHAT ADVICE DO YOU HAVE FOR PARENTS IN A SIMILAR SITUATION?
AN: This is still the hardest part of this journey, but I have been so grateful for the support, ribbing and hugs of my boys throughout. They could and can see the physical differences in me. I was a seven-day-a-week runner, cyclist and tennis player, and I have had to shift my activities to those that I can do more easily. Every opportunity that I can, I have invited my boys to participate with me. Whether it is doing laps at the Y or going for a bike ride, I am steadfast in my determination to have active time be family time. These times together when my physical challenges are apparent, but not bringing me down, are some of the best times for Eliza and me to have conversations with our children.

There is no textbook out there on how to talk to children about ALS. ALS looks different in every person, and every family is different. My advice to others would be the same advice I gave to our parent community at Greenwich Country Day—encourage the questions, honor them with a thoughtful and honest response, and learn together with your children.
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GM: PEOPLE WHO KNOW YOU WELL APPLAUD YOU FOR CONTINUING ON WITH YOUR CAREER DESPITE THIS SETBACK. WHAT KEEPS YOU GOING ON DIFFICULT DAYS?
AN: I have the best job in the world. Never more so than now. I am in a place that not only encourages but demands a learning, proactive, positive, caring, happy lens to every day. I am surrounded by thoughtful, creative children and adults, and this has always been inspiring. Daily, meaningful purpose is an important goal, and it comes with my job description. I defy you to have a bad day in that role.
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GM: WHAT DO YOU FEEL IS THE MOST CRUCIAL CHANGE, ON A GRASSROOTS OR GLOBAL LEVEL, THAT NEEDS TO HAPPEN IN FINDING A CURE FOR THIS DISEASE?
AN: As we have learned and become more involved in the community doing the science and raising the awareness around this disease, we have become more hopeful, not less. We have been fortunate to meet some of the brightest minds in science and the most generous hearts in philanthropy over the last year. I have heard more than once the saying, “ALS is not an incurable disease. It is an underfunded one.”

In the 100 years that ALS has been a diagnosis, there have been more breakthroughs in the science in the last three years than the prior ninety-seven. This is due in large part to the awareness and fiscal support built out of the Ice Bucket Challenge, but it is also due to the powerful partnership within the medical and the philanthropic communities.

I am a teacher. I believe that when people learn about the science and the stories of this fight, the conversations will happen that lead to the action, the science and the giving that will end this disease and make such a profound difference in the lives of the families living with it.

 

 

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