Joanne

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Joanne Fluke Since she was a young girl, Joanne wanted to be a ballroom dancer. She was born with Caudal Regression Syndrome, where she could not stand on her webbed legs. The fact that she has never walked did not deter her from her goal. Dancing is her passion especially since she discovered Zumba® Fitness.  Today she is a Zumba instructor and leads experiences for children and families at Children’s Mercy Hospital in Kansas. Watch Zumba co-founder Beto Perez leading a class at Joe DiMaggio Children’s Hospital in Florida.

Watch Joanne on NBC news:

Watch Beto Perez, the co-founder of Zumba®, lead a class in the hospital:

Sean

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Sean had a heart transplant when he was three years old. We met him at a school-wide service learning day as 407 students created SoaringMurals to brighten the waiting rooms at Beth Israel Medical Center.  During the activity Sean told Lisa, “When I was a baby I lived in the hospital for years. I know that this is not simply an art project, it is a lifeline that will let hospitalized children and their families know that they are not alone.”

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Sean stood up at the Closing Ceremony in front of all of the students in elementary, middle and high school and told them his story and thanked them for being part of the project. The gym erupted in applause and the students and teachers gave him a standing ovation. Sean spoke at many of our events sharing his courage and his positive message about doing something nice for other people. Watch SoaringChampion Sean inspiring teens to make a difference.

See Sean speak at Soaringwords event, 3:55 time code:

 

Gabby

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Gabby Photo 2Gabby missed two years of school during her treatment. Her mother discovered Soaringwords from her job at Johnson & Johnson where we shared Caring for Yourself as a Caregiver webinars and other healing tools for employees and families grappling with serious illness. Soaringwords taught Gabby and her mom about the power of healing imagery in order to help Gabby experience a sense of control. Each morning and night, Gabby and her mom closed their eyes re-enacting the special SoaringImagery that Gabby designed.

 

 

Gabby Photo 1

In this way, Gabby and her mom took an active role in her healing. Gabby wanted to do more to share the power to heal with others.  Each time she went to the oncology clinic for her treatment she brought a different activity – superheroes, haikus and other positive interventions to share with patients and families. This gave her a sense of meaning and purpose and the opportunity to focus on helping others instead of worrying about her condition.

 

 

 

Grace’s Story

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graceWhen Grace was 9 years old, a brain disease resulted in a month-long hospitalization. During this time, her best friend Naomi brought her a SoaringQuilt and SoaringPillow decorated with colorful, positive messages and artwork. This healing act inspired so much hope and connection for Grace and her entire family. Grace started a Soaringwords club at her high school. Each week, students came together to “pay it forward” and do different Soaringwords projects to donate to hospitalized children. Today, Grace is in college grateful that her experience was able to inspire other children to find hope. 

(Photo Credit: Arnold Adler, www.arnoldadler.com)

Tara Fitzgibbon

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Tara is a ray of sunshine with an enormous heart.  She was a passionate team captain leading many JetBlue crewmembers in the annual Light Up a Life employee volunteer program where employees decorated hundreds of SoaringQuilts to donate to hospitalized kids in 65 cities throughout North America and the Caribbean. Tara also was a volunteer for Soaringwords’ Make A Difference Day, where she and her son Justin participated in a dance jam to benefit ill kids. When Tara’s son Justin became paralyzed from a cancerous growth on his spine, the mother and son lived in the hospital and rehabilitation center for two years. To cheer up Justin, Tara’s co-workers sent him a customized quilt to brighten up his hospital room. Justin was also unanimously voted by the nurses and Child Life staff as the Mayor of the Ninth Floor. It is not surprising that Tara has also become a well-loved source of strength and comfort for all of the patients and their parents who look to her for support, hugs and her deep faith and wisdom. Tara and Justin are featured in Lisa’s first book SOARING into Strength: The New Science Approach to Help You Heal. On behalf of everyone at Soaringwords, we salute you Tara and we love you.

Soaringwords’ Volunteers

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Thomas Estler

A whirlwind of energy and love, Thomas has led Soaringwords Nia dance jams in several states. Whether darting through the gym, dancing on a picnic table top in New Orleans, leading workshops in hospitals, or representing Soaringwords at JetBlue events at JFK or Fashion Week New York, Thomas brings great enthusiasm and compassion to everything he does. At school dance programs he is a rock star. Forth and fifth graders gather around him and follow his each step. Favorite Soaringwords moments: when children share their own creative dance moves.

Ellen Bari

Over the years, Ellen has  ‘rolled up her sleeves’ to help Soaringwords soar, whether it was getting down on her knees to organize the office,  making a mess with markers with a group of New York City kids, or trekking  out to New Orleans not long after Hurricane Katrina for much needed programs. Ellen’s creativity, insight and humor shine through in the seminal Soaringwords integrated arts curriculum she helped us develop, which has been used in hundreds of schools all across the country.  Favorite Soaringwords moment: discovering that some college students had decorated the Soaringwords quilts with interactive games.

Caroline Kohles

Caroline helped transform Times Square into Soaringwords largest dance jam for Make A Difference Day. She also led the first Soaringwords Nia dance jam with students at P.S 152 and cheered as we shared jams in 30 states. She brings her unique philosophy of “dancing through life” to inspire kids and grown-ups to move with the body’s way.

Liz Eisen, Sam Dworkin and Natalie Dworkin

This family has been a strong supporter of many of the Soaringwords museum initiatives. Sam and Natalie are featured in the SoaringMuseums videos. Sam has volunteered at many community events in the JCC and schools throughout the city. For two years, Sam and Natalie led several volunteer projects as their bar and bat mitzvah community service commitment.

Amber Nevens

Amber has taken on many huge volunteer projects such as managing our office move and helping us organize for volunteer projects. For years she was the Soaringwords team captain for New York Cares.  She brings light and joy to all of the volunteers programs she leads.

Beth Zagoria

Beth is a talented Creative Director who has added style, passion and great design to many Soaringwords offerings including the Soaringwords webinar presentation (What to Say or Do to Support Parents with Seriously Ill Children), and fliers and posters for all of our events.  She’s also helped direct several SoaringMuseums videos.

Alex Shear

We met Alex at the JetBlue Airways’ Light Up A Life program, where he volunteered for five straight days, eight hour shifts each day. At River to River Festival, Fashion Week or school programs, Alex’s love of people pulls everyone into the cause and inspires them to do something fun to help ill children and families to “Never give up!”