SAVE THE DATE: 2nd Annual Chris Carrino Foundation Dinner/Dance

Be sure to mark your calendars now!  Our second annual dinner dance will be taking place on Thursday, July 19, 2012 at Russo’s on the Bay in Howard Beach, NY.  If you couldn’t make it to our event last year, here’s what you missed:  First Annual Chris Carrino Foundation Dinner/Dance Stay tuned to our site for upcoming event ticket information. Hope to see you there!

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Would You Like to Help Us Raise Donations for FSHD Research?

The Chris Carrino Foundation for FSHD recently created a fundraising page through FirstGiving.com.  FirstGiving offers tools and expertise to connect with friends and family and make fundraising less overwhelming – and even fun. Easy to use online tools for creating a personalized fundraising page in just minutes, allowing you to meet and exceed your fundraising goals. A page with your own unique web address allows you to tell your personal story of fundraising, encouraging donors to be engaged in your cause. Online tools that make it simple to leverage your networks, including the use of tools such as email, Facebook, Twitter, and your own blog. A means to raise awareness about important issues and raise money in a fun and engaging way. Does this cost anything? Your FirstGiving page is free.  FirstGiving sends all donations directly and securely to the Chris Carrino Foundation donation page, where we will pay a nominal fee for using their service. Is this site secure? 100%! Keeping your information safe from identity theft and internet fraud is FirstGiving’s priority.  FirstGiving is VeriSign secured and PCI … Continue reading

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VOLUNTEERS NEEDED FOR FSHD RESEARCH

The Chris Carrino Foundation for FSHD, together with researchers at State University of New York at Stony Brook and the New York Institute of Technology’s College of Osteopathic Medicine, is seeking volunteers for a collaborative research study into genetic factors determining FSHD severity.  FSHD severity varies significantly, even within families sharing the same common genetic mechanism, implicating other potential genetic “modifier” factors, which this study aims to uncover.  Uncovering these factors could improve understanding of the disease and, ultimately, help in the search for novel treatments. This study is open to recruitment for individuals with FSHD who are over 18 years of age.  There is no cost for participation and an on-site visit is not required. Interested individuals will be mailed a saliva sample collection kit together with a health questionnaire and permission to review relevant medical records upon enrollment. For further information or enrollment please contact Jennifer Burgess at JenniferBurgess@chriscarrinofoundation.org or the principal investigator, Dr. David Tegay, at (516) 686-3897, or by e-mail at dtegay@nyit.edu.

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PRESS RELEASE: The Chris Carrino Foundation for FSHD Extends Funding of Genetic Research Project

September 19, 2011 Massapequa Park, New York The Chris Carrino Foundation for FSHD announced the extension of a scientific research project directed towards understanding the genetic basis of variable severity in FSHD (Facioscapulohumeral Muscular Dystrophy). The study, entitled, “Uncovering the Genetic Basis of Variable Severity in FSHD” is headed by Dr. Eli Hatchwell, formerly Director of the Genomics Core Facility at the State University of New York at Stony Brook, and currently Chief Scientific Officer of Population Diagnostics and Adjunct Associate Professor at Stony Brook. Dr. Hatchwell received his medical degree from Cambridge University and his PhD from Oxford University. He has previously worked on autism and congenital heart disease and is a welcome addition to the FSHD field. Dr. David Tegay, an Associate Professor of Internal Medicine and Medical Genetics, at the New York Institute of Technology’s College of Osteopathic Medicine (NYCOM), is a Co-Investigator on this study. “We’re excited to extend this significant project and look forward to the advances in FSHD genetic research in the near future,” stated Jennifer Burgess, Co-Chair of The Chris Carrino Foundation for … Continue reading

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The Chris Carrino Foundation for FSHD Inaugural Dinner Dance (Photos & Video)

View Photos of our Event:  Foundation Inaugural Dinner Dance Photos View Video Footage of Our Event: Foundation Inaugural Dinner Dance Video The Chris Carrino Foundation for FSHD Inaugural Dinner Dance Thursday, August 18, 2011 Russo’s on the Bay 162-45 Cross Bay Blvd Howard Beach, NY 11414 Cocktail hour at 6:00 pm Followed by Dinner at 7:00pm Top shelf open bar all night DJ, Dancing, Live auction and Raffle prizes Thanks to our Platinum level sponsors: The Chris Carrino Foundation for FSHD is a 501(c)3 charity dedicated to eradicating the life altering effects of facioscapulohumeral muscular dystrophy.

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STORY: NBA Announcer Chris Carrino: My Battle Against FSHD Muscular Dystrophy

Yahoo! Sports | The Post Game. Friday, May 27, 2011 4:11 pm Written by: Chris Carrino One of my earliest broadcasting memories is calling the World Series in 1980. It wasn’t for any network, just my tape recorder, while watching it on the TV in my parents’ bedroom. I was 10 years old. No one ever heard it but me.In June 2002, at the Staples Center in Los Angeles, I called my first NBA Finals game on WOR radio in New York. I’m fairly certain a few more people heard that broadcast. Somewhere in between, I was diagnosed with fascio scapulo humeral dystrophy or FSHD for short, a form of muscular dystrophy. FSHD is a thief in the night, slowly robbing you of your ability to use your arms and legs and even to smile the way you want to. I was born with it, but didn’t know it until my college years. That’s when I started to lose some of the athleticism I had always enjoyed. My running was slowed to a fast walk, shooting a basketball felt like … Continue reading

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AUDIO: Chris Carrino Brings Awareness on the Boomer & Carton Morning Show

Chris Carrino appeared on the Boomer and Carton morning show on WFAN, Tuesday, May 3. Listen to the full interview: Boomer & Carton talk with Chris Carrino

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AUDIO: Bob Salter Interviews Chris Carrino on WFAN

An in depth interview with Chris conducted by Bob Salter, which aired on WFAN on Sunday morning, April 17th. Listen to the full interview: Bob Salter speaks with Chris Carrino

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ESPN.com: Chris Carrino talks about life with MD

Updated: April 13, 2011 Associated Press NEWARK, N.J. — New Jersey Nets radio voice Chris Carrino has been living with a secret for almost two decades. The 40-year-old, who has spent the past decade describing the franchise’s run at NBA titles early in the decade to the misery of recent losing seasons, has done it with his body being gradually attacked by a form of muscular dystrophy. Carrino has facioscapulohumeral dystrophy, one of nine types of MD, and this one has neither a treatment nor a cure. “I have always been reluctant to talk about it because I never wanted to seem different,” Carrino said. “I never wanted to be treated differently. It took me a while to talk to the people, even friends. It’s something I felt that as long as I could get away with people not knowing, it would be fine.” Carrino is doing more than talking these days about his debilitating disease. He has launched the Chris Carrino Foundation for FSHD. Read the full article at ESPN.com.

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Star-Ledger Article: D’Alessandro: Battling muscular dystrophy, Nets radio voice Chris Carrino makes the biggest call of his life

By Dave D’Alessandro/Star-Ledger Columnist Published: Tuesday, April 12, 2011 The first time he was aware that something was wrong was when he was in his late teens, and being someone who doesn’t complain about anything — that should be on his business card, by the way — Chris Carrino decided to keep it to himself. It wasn’t any one incident, it was just a series of gradual, insidious signals of a disease’s awakening: One day the basketball would feel like a 5-pound weight; another day the easy burst from the batter’s box to first base would turn into a laborious jog in deep sand. When they finally told him it was muscular dystrophy that had suddenly taken control of his body, Carrino was 23 years old. Being Carrino — and again, this is why everyone regards him as special — his initial response was, “Well, at least it’s not something life-threatening.” But reality, cruel as it often is, intervenes. He’s lived with this horrid disease — facioscapulohumeral muscular dystrophy, or FSHD, the most common form of MD — for nearly … Continue reading

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Press Release: “Voice of the NETS” Chris Carrino Reveals Struggle with FSHD

April 8, 2011 EAST RUTHERFORD, N.J.—Chris Carrino, the radio voice of Nets Basketball for the last decade, has revealed publicly for the first time that he suffers from Facioscapulohumeral Dystrophy (FSHD), a form of muscular dystrophy. In an effort to raise money for this underfunded disease, Carrino, 40, has launched The Chris Carrino Foundation for FSHD. Read full press release here.

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NYT Article: “Reanimated ‘Junk’ DNA Is Found to Cause Disease”

By GINA KOLATA Published: August 19, 2010 The human genome is riddled with dead genes, fossils of a sort, dating back hundreds of thousands of years — the genome’s equivalent of an attic full of broken and useless junk. Some of those genes, surprised geneticists reported Thursday, can rise from the dead like zombies, waking up to cause one of the most common forms of muscular dystrophy. This is the first time, geneticists say, that they have seen a dead gene come back to life and cause a disease. “If we were thinking of a collection of the genome’s greatest hits, this would go on the list,” said Dr. Francis Collins, a human geneticist and director of the National Institutes of Health. The disease, facioscapulohumeral muscular dystrophy, known as FSHD, is one of the most common forms of muscular dystrophy. It was known to be inherited in a simple pattern. But before this paper, published online Thursday in Science by a group of researchers, its cause was poorly understood… Read the entire article here.

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Neurology Today Article: New Report Identifies Pathogen for Fascioscapulohumeral Dystrophy

By: Tom Valeo Published: September 16, 2010 – Volume 10 – Issue 18 – p 15 Nearly 20 years after the discovery of the mutation, scientists have finally determined how it contributes to a common form of muscular dystrophy known as facioscapulohumeral dystrophy, or FSHD, which occurs in about 1 in 20,000 births. Although questions remain, the discovery, reported online in Science on Aug. 19, points the way toward an effective treatment for FSHD, which produces progressive wasting of muscles in the upper body… Read entire article here.

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Carmel Running Club’s 5K

Sunday, October 10, 2010 Putnam County Veterans Memorial Park Carmel, New York

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Evening of Music

Thank you Thomas Moran and Friends for a terrific evening of music at Massapequa Perk Coffee House!

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