Feb 24, 2020 | Asthma, Featured, Patient 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.”

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!”

HUNTINGTON, NY, October 3, 2019  –  The 17th Annual Companions in Courage Foundation Golf Classic was played in an “Irish Mist.” That inspired Huntington Country Club Pro Jim Smoot to announce, “Gentlemen. People pay a lot of money to go to Scotland to play in weather like this. We’re throwing it in today for free!”

Undaunted, more than 120 golfers teed it up in support of pediatric patients and their families who benefit from the work of the Companions in Courage Foundation. Host Pat LaFontaine was joined by former teammates, Clark Gillies and Bob Nystrom. Hockey’s Eddie Westfall, Benoit Hogue and Pat Jablonski led a host of other celebrities that included the NBA’s Wally Szczerbiak, the NFL’s Marty Lyons, and soccer star Mike Grella.

Michigan artist Paul Madden spent the day completing a commemorative original drawing featuring LaFontaine in front of the U.S. Capital surrounded by youth hockey players. The hockey star was recently elected to the President’s Council on Youth Sports, Fitness and Nutrition.

LaFontaine recognized Westfall – the team’s first captain – for being an underrated contributor to the team’s legacy. He said that Westfall brought the Boston Bruin’s championship culture to Long Island and deserved a lot of credit. Westfall joked that he was Long Island’s first ATM machine. He said, “all these young guys coming to Long Island would run out of money. They’d come to the old man in the room and I’d have to cover them until the end of the month.” The former captain then acknowledged all of the guests in attendance. He told them that they were the most important people in the room – not the former pro athletes – because of their commitment to benefit children in need.

LaFontaine and the foundation’s executive director, Jim Johnson introduced treasurer Carl Lombardi as the 2019 Pioneer Award winner. Lombardi stepped in when former treasurer Roger Simon resigned the position last year. Not only did he maintain the books for the foundation, he also worked to secure the donation of 3-D printers for a pilot program at local hospitals.

Lombardi’s family surprised him at the post-round dinner. He told everyone that , it just feels right,” to be doing this and he’s proud to be associated with LaFontaine and the charity.

LaFontaine sent thanks to all of the sponsors, but particularly to Lombardi and to Mike Heagerty of Edward E. Hall Insurance who both served as FRANCHISE sponsors for the day. Richard Pluta and his family sponsored the cocktail hour and dinner that was enjoyed by all.

The day was filled with poignant moments, including traditional tributes (at Amen Corner) to CiC Foundation supporters who have passed on. The golf course, and later, the dining room was filled with a spirit and enthusiasm that is contagious and inspiring.

Johnson presented a “year in review” that featured images of the 2018 Santa Connection and Heisman Trophy (Kyler Murray) visit to Mount Sinai Children’s Hospital. He also spoke about the foundation’s association with the Cradle of Aviation Museum and live Google Hangouts with Apollo and International Space Station astronauts. In 2018, the foundation did a complete make-over of the Lion’s Den Room in Wolfson Hospital in Jacksonville. The foundation recently expanded their relationship with Google and accepted the donation of 20 Pixel Slates for distribution to children’s hospitals.

The presentation closed with a personal video shot by New Jersey Devils star P.K. Subban that he sent to a patient in a local hospital. The impact of LaFontaine’s work was palpable in the room when the emotional video concluded.

The live auction featured unique golf experiences donated by Nick Patti (Liberty National); Garrett Bodington (Sebonac Golf Club); and Bill Talmage (Friar’s Head Golf Club). Sal Paterno of Milano Fine Men’s Fashion in Huntington Station generously donated a custom suit, and this auction featured one of the most unique items we’ve ever offered. Paul Madden has been collecting the signatures of Hall of Fame hockey players for more than 25 years. His jersey was authenticated and signed by more than 133 Hall of Famers, including Wayne Gretzky, Gordie Howe, Bobby Orr, Mario Lemieux and Guy Lafleur. A spirited auction was held for this one-of-a-kind item and his generosity led to a windfall for the foundation.

Due to the weather conditions, the outing was held as a full team scramble. The foursome of Mike Heagerty, Greg Heinssen, Mike Dischmann and John Catapano took the low team honors. They bested the runner-up teams of Mike Matura, Zoran Grgas, Vinnie, Naletilic and Damir Penava; along with John Kiernan, Tony Trombino, John Shea and Don Krause.

Many golfers took advantage of pre-round massage and stretching offered by Kerri Winans Kaley of StretchLab in Woodbury. Her Woodbury shop on Jericho Turnpike is revolutionizing one-on-one assisted stretching and flexibility training classes. In their innovative group sessions – no matter what your range of motion or fitness level , they can help. Their group stretches are Flexologist-led and will help to increase flexibility and improve range-of-motion.

LaFontaine thanked the Major sponsors that included Rob MacInnis, Striano Electric, Jerry Wood, Delaney Contracting, Patti & Sons, Inc., Croatian-American Foundation, Harbor Irrigation, Cameron Engineering & Associates, Paul Gillin, Siemens, G2D Development, Mercedes Benz of Huntington, Gundermann & Gundermann, Heagerty Family Foundation, IRC Securities and J.C. Steel Corporation.

LaFontaine also thanked the Pluta Family for sponsoring the cocktail party and dinner, Jim Buzzetta of Mercedes Benz of Huntington for sponsoring the Hole-in-One contest; John Cameron of Cameron Engineering for sponsoring the player’s gifts, Sean McAuley and the McAuley Family Foundation for sponsoring the Putting Contest, Jerry Wood for sponsoring the Texas Hold’em Tournament;  Rob MacInnis for sponsoring the Premium Cigars; Andrew Cameron of BNB Bank for sponsoring the Driving Range.

Finally, an event of this magnitude cannot happen without the tremendous efforts of our volunteers: Cheryl Brown, Mia Gillin, Chris Crean, Dan Edwards, Wayne Scarpetta, Joe and Pete Johnson. Their boundless energy and enthusiasm brightened a dreary day and ensured that no child in the fight for life or health should have to go through it alone.

Hockey Hall of Famer will be liaison to President’s Council on Sports, Fitness and Nutrition

by William Douglas @WDouglasNHL / NHL.com Staff Writer    September 19th, 2019

WASHINGTON — Pat LaFontaine has been named to the National Fitness Foundation Board of Directors, and the Hockey Hall of Famer will serve as the board’s liaison to the President’s Council on Sports, Fitness and Nutrition.

“It’s a tremendous honor,” LaFontaine said Thursday at Washington’s Fort Dupont Ice Arena, where Ivanka Trump helped unveil the White House’s national youth sports strategy. “Sports and hockey have been a stepping stone to what I do today. The character-building you learn from sports, the life skills you learn from sports, is really its greatest value.”

The National Fitness Foundation is the only congressionally chartered nonprofit organization that focuses on health and fitness. It develops corporate partnerships to help expand youth sports participation in the United States and is the official charity of the President’s Council on Sports, Fitness & Nutrition.

LaFontaine’s addition to the board and his liaison role will give hockey a presence on bodies that will help draw awareness to the importance of sports to the development and well-being of America’s youth.

“To have a figure like him, especially as a hockey fan and hockey player, is awesome,” said Washington Capitals defenseman John Carlson, who attended the Fort Dupont event with teammate Tom Wilson.

LaFontaine, the League’s vice president, hockey development and community affairs, said his work on the NHL’s Declaration of Principles made him a good fit for the National Fitness Foundation’s board.

The declaration, crafted by 17 hockey stakeholders and unveiled in September 2017, advances policies, programs and initiatives to create the best possible experience for the entire hockey community. It states, in part, that all hockey programs should provide a safe, positive and inclusive environment for players and families regardless of race, color, religion, national origin, gender, age, disability, sexual orientation and socioeconomic status.

“All sports, but being in the hockey family, I’m proud to be part of the hockey family for all that it stands for — the finesse of the game, the excitement of the game, the love of the game,” he said, “but more importantly, what the game gives you: the life skills, the character, the development, the values that the sport stands for.”

LaFontaine brings a wealth of knowledge to the foundation as a former player and youth hockey coach. Selected by the New York Islanders in the first round (No. 3) of the 1983 NHL Draft, LaFontaine had 1,013 points (468 goals, 545 assists) in 865 games for the Islanders, Buffalo Sabres and New York Rangers from 1983-84 to 1997-98.

Born in St. Louis but raised in Waterford, Michigan, LaFontaine was elected to the Hockey Hall of Fame and the U.S. Hockey Hall of Fame in 2003.

LaFontaine said he’s eager to use his position on the National Fitness Foundation board to try to reverse the decline in youth participation in team sports.

A 2017 study by the Sports & Fitness Association and the Aspen Institute found that the number of children between ages 6 and 12 who participated in team sports dropped from almost 45 percent in 2008 to 37 percent in 2016.

Thirty-two percent of U.S. children are overweight or obese, according to the Fitness Foundation’s website, and $117 billion is spent annually in health care costs associated with physical inactivity.

“I was concerned with some of the stats coming out with all sports where we’re losing 70 percent of all kids in all sports at [age] 13,” he said. “That become concerning to me because values start at home, but school and sports are vehicles to reinforce those values. So to have this position, to be part of the National Fitness Foundation is a tremendous honor — and also a liaison to the President’s Council on Sports, Fitness and Nutrition — I’m excited about that role.”