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The ‘Mane’ Event Inspires

June 1, 2021 in News

New Series Inspires and Educates Pediatric Patients

HUNTINGTON, NY, April 2021  –  The Companions in Courage Foundation announced today that their weekly series, The ‘Mane’ Event is now available on iTunes, Spotify and on PodBean.

The ‘Mane’ Event is a series of short inspirational videos  featuring people who have overcome challenges , designed to motivate pediatric patients to get well. Videos drop every Thursday and include a handout that Child Life Specialists can use to guide patients through each story and to evoke conversation about how the stories relate to their  treatments.

Isolated by COVID restrictions, these kids need inspiration now more than ever. Initial stories in the series have featured  Special Olympian Chris Nikic – the first person with Down Syndrome to complete an Ironman Triathlon; Patrick Harten – the air traffic controller who helped guide Captain Chesley “Sully” Sullenberger to a safe landing on “The Miracle on the Hudson;”  Kyle Merber – an American middle distance runner who overcame a serious injury to set a world record; and Clinton Brown III, a little person with Diastrophic Dysplasia who overcame all odds to lead a life of service on behalf of Little People.

Future stories will include similar inspirational achievements by the famous and not-so-famous.

To support this effort and to suggest future story ideas, please visit

https://www.classy.org/campaign/the-mane-event/c340880 

The ‘Mane’ Event can be accessed at:

iTUNES: https://podcasts.apple.com/us/podcast/the-mane-event-podcast/id1563434029
Spotify: https://open.spotify.com/show/5aUv7iUElgdT6EJXRjSVKC

PodBean: https://courage16.podbean.com/

YouTube: https://www.youtube.com/user/CiC16TV

Santa Claus visits pediatric patients virtually

December 9, 2020 in News

by Brett Levine – WALK-FM

(East Farmingdale, NY)-  Over the past nine months, the coronavirus pandemic has cancelled events like the Olympics and Broadway shows but it turns out there is one thing, COVID can’t cancel and that’s the Companions in Courage Foundation’s, 13th annual 2020 Santa Connection.  The Companions in Courage, in collaboration with Google, Cisco Systems and Connoisseur Media Long Island, provided pediatric patients across North America with an opportunity to have a personal and virtual visit with Santa Claus last week.  More than 80 children and families from Long Island to Alaska and even Canada, participated in this year’s event.

On Long Island, select pediatric patients at Cohen Children’s Medical Center in New Hyde Park and at Mount Sinai South Nassau in Oceanside were able to speak one-on-one to Santa Claus, live from the “North Pole”, at Connoisseur Media Long Island.  Through generous donations, the hospitals were also provided with gift cards from the foundation to use for purchases for each of the children that took part in this year’s Santa Connection event.

James Johnson, Executive Director for The Companions in Courage, “Our foundation provided gift ca

rds to the Child Life departments at each participating hospital. The Child Life staff polled their patients and 

purchased items with the gift cards that had meaning to each patient. The gifts ran the gamut from Pez dispensers to foot massagers. Though, we did have to decline the young boy who asked Santa for a Lamborghini!”  Johnson also said, “with COVID restrictions limiting hospital visitation from even family members this year, it was more important than ever to connect these special patients to the North Pole”.

Over the years, The Companions in Courage, which was founded in 1997 by Hall of Fame hockey player, Olympic athlete and former New York Islander, Pat LaFontaine, has built 20 interactive rooms for children at pediatric hospitals across North America, including on Long Island at Cohen Children’s Medical Center in New Hyde Park and Huntington Hospital in Huntington.  The interactive rooms, called “Lion’s Dens”, were designed to help the pediatric patients unwind and relax and have some fun.  In the Lion’s Den, the children can play with Xbox kiosks and also access Google Chromebooks.

The Companions in Courage are still accepting donations for this year’s Santa Connection, donations can be made here https://www.classy.org/campaign/santa-connection-2020/c314065 .

Heisman Star Brings Inspiration to Young Patients

February 24, 2020 in News

Feb 24, 2020 | AsthmaFeaturedPatient Stories |

Patients and families at the Child Life Zone at Mount Sinai Kravis Children’s Hospital received a special visit on Sunday, December 15, from Joe Burrow, just a day after he was named the 2019 Heisman Trophy winner. The Louisiana State University quarterback hosted a special trivia-themed episode on KidZone TV, answered questions, opened up about his personal life and adversity, and provided inspiration to patients and their families in an appearance made possible through the Companions in Courage Foundation.

Mr. Burrow also signed football keepsakes for the patients, much to the delight of one 13-year-old patient, Ryan Diaz, an aspiring football player himself. Ryan already has helped his Harlem Jets youth football team win two championships—no easy feat for this offensive guard and center who happens to have severe asthma.

“He has had asthma since he was a baby, and he has been in and out of the hospital,” recalled his mother, Christina Ortiz. “He would miss up to 18 days a year of school.” Added Ryan: “It was really hard. I would miss so many things because I couldn’t control my asthma. I struggled so much from something I didn’t cause.”

“We have many, many patients like Ryan with severe asthma,” said Alfin G. Vicencio, MD, Vice Chair for Clinical Affairs and Strategy, and Division Chief for Pediatric Pulmonology at Kravis Children’s Hospital, who started treating Ryan in September 2018. “He has multiple triggers, and it’s hard to isolate one thing, so what is your recourse, stay inside a bubble?”

Dr. Vicencio is primarily treating Ryan with an injection of omalizumab, a monoclonal antibody, every two weeks. “This medication targets very specific molecules that are important in the asthma-inflammation cascade,” said Dr. Vicencio. The treatment acts to decrease the number of sudden episodes of wheezing, shortness of breath, and trouble breathing in individuals whose symptoms are not controlled with inhaled steroids.

“Mount Sinai has a very active program for the diagnosis and treatment of children with severe asthma,” said Dr. Vicencio. “This includes some important research initiatives that are starting to identify new subtypes of asthma, some of which may be driven by unsuspected infections.”

Other components of the research program, he added, are starting to identify new genes in the airway that may contribute to severity. This is part of a collaborative project with Supinda Bunyavanich, MD, MPH, MPhil, Professor of Pediatrics, and Genetics and Genomic Sciences, aimed at finding new therapeutic targets for patients with severe disease.

Following this protocol has allowed Ryan to keep active—except for when he was sidelined for two weeks in February with the flu and pneumonia. He is now able to resume his strenuous four-hour weekend football workouts and continue his participation in a dance and theater program.

Throughout it all, he has excelled in middle school, which has earned him an academic scholarship to Archbishop Stepinac High School in White Plains, New York, a football powerhouse.

“I just love football,” said Ryan, whose father, Juan Diaz, a registrar in Mount Sinai’s Institute for Advanced Medicine, played football for George Washington High School in New York City and has been a coach for the Harlem Jets since 2013. “It is a bond,” said Ryan.

Mr. Burrow is now certainly part of this bond, too. “It was really inspiring to speak with someone of that caliber,” said Ryan. “We talked about football, staying in school, and doing your best. One thing that made me proud—he signed my football jersey, and I gave him a signed Ryan Diaz #74 Harlem Jets hat, which he wore for the entire event.”

As for the football that Mr. Burrow signed, Ryan said he no longer has it. “We decided to give it to Dr. Vicencio because he has done so much for me. He let me lead a normal life. He really likes football, and I felt he really deserved that,” said Ryan. “I felt very, very touched,” said Dr. Vicencio. “I told Ryan that when he is in the National Football League, I will ask for one of these signed by him.”

 

Are you Naughty or Nice?

December 13, 2019 in News

One of the most exciting experiences for many pre-teens during the holidays is the chance to visit Santa Claus at the local shopping mall to find out if they’ve been “Naughty” or “Nice.” The opportunity to meet St. Nick and personally deliver their list of requested toys is always a highly anticipated event.

But for pediatric patients and the families of children confined to hospitals, that is one of the joys of the season that escapes them. That is where the Companions in Courage Foundation comes in. One of the most anticipated events of our year is the Santa Connection.

For 2-3 days in early December, Steve Maykowski of Google hosts Santa Claus at the North Pole located at the YouTube Studios in New York City. A host of Googlers volunteer their time to serve as Santa’s elves as they conduct live Hangouts with almost 100 pediatric patients across North America. Child Life directors and staff create a pipeline to the studio before each patient visit to remind Santa who has been good, for goodness sake!

Santa Claus is a right jolly old elf who “knows” everything about each patient, including siblings and pets! He sings carols with the children and often shares a few surprises that bring squeals of joy. And because Companions in Courage Foundation supports hospitals in Montreal and Ottawa, Pere Noel fills in to share stories in French.

Mark Leff of Cisco Systems, has been in charge of Santa Connection for a decade. He said, “it is an honor to help make these special children feel a little bit brighter during the holidays.” Leff helps raise money throughout the year to ensure that each child receives a gift from Santa. He said, “We know that for many of these children, it’s likely to be the only gift they receive this year.”

Pat LaFontaine spends a large part of the Santa Connection checking in to the personal Hangouts and commenting on social media. He said, “there are many moments when I have to hold back my tears. These children are so courageous and filled with hope. Santa is so patient and filled with love. I have to thank everyone involved for helping all of us get in the holiday spirit as Santa Claus is coming to town!”