PRESS
Help Children With Rare Diseases Get the New Medicines They Need
July 5, 2011
RemedyMD and the Children’s Rare Disease Network Announce Plan to Give Away Free Rare Disease Research Registry Valued up to $50,000 via Contest
February 25, 2011
7,000 Bracelets for Hope™ Campaign Raises Awareness For Over 7000 Rare Diseases
February 08, 2011
Global Genes Project Announces "Wear That You Care!" Denim Awareness Camaign for Rare Disease Day 2011
January 26, 2011
Thumbelina Kids: Tiny as Dolls, They Strive to Fit In
January 18, 2011
2010 ROCK STARS OF SCIENCE!" DR. EMIL KAKKIS HONORED AS A 2010 ROCK STAR OF SCIENCE
November 17, 2010
7,000 Bracelets For Hope - A Rare Disease Awareness Campaign
November 1, 2010
Global Genes Quarterly Conference Call Overview
October 28, 2010
Seeking A Cure For Jonah
October 19, 2010
The Global Genes Project Charity Benefit and Fashion Week Kick Off!
September 7, 2010
Advocates to bring rare disease philanthropy under one umbrella
August 9, 2010
Big pharma moves from 'blockbusters' to 'niche busters'
August 9, 2010
Pfizer's Viagra Faces FDA Review for Use in Children With Lung Condition
July 27, 2010
NIH Takes On New Role in Fight Against Rare Diseases
July 24, 2010
NORD Testifies Before Senate HELP Committee
July 21, 2010
A Great Win for Rare Diseases in U.S. Senate Appropriation Bill
July 15, 2010
Regulatory Flexibility
July 02, 2010
Children's Rare Disease Network Partners With Medpedia.com To Create Rarespace
June 29, 2010
FDA Database Aims to Spark Orphan-Disease Drug Development
June 18, 2010
EXCLUSIVE: Pfizer plans to move fast on rare disease pacts
June 17, 2010
Good news for rare disease?
June 15, 2010
THE CHILDREN'S RARE DISEASE NETWORK LAUNCHES VALUABLE INFORMATIONAL BLOG
June 9, 2010
FDA Grants Orphan Drug Status For Cyclodextrin Compound To Treat Fatal Genetic Cholesterol Disease
May 17, 2010
Genetic Sequencing Kit Catches Rare Mutation for TARP Syndrome
May 15, 2010
Parents of child with rare illness aim to help
April 26, 2010
AltheaDx and The Nicholas Conor Institute for Pediatric Cancer Research Announce Molecular Diagnostics Collaboration to Improve the Diagnosis and Treatment of Childhood Cancer
April 19, 2010
Cooking with the Genzyme Recipe: New Players Funding Rare Disease Drugs in Boston
April 12, 2010
PhRMA Honors Patient Advocates Ron and Raychel Bartek
March 18, 2010
A Legacy For and Beyond Batten Disease
March 16, 2010
Study opens new avenue for developing treatments for genetic muscle-wasting disease
March 15, 2010
Novato's BioMarin finds niche and growing quickly
March 13, 2010
First whole genome sequencing of family of 4 reveals new genetic power
March 10, 2010
Push to Cure Rare Diseases
March 10, 2010
NIH-Funded Research Study
March 8, 2010
250 Million People Worldwide Estimated to Suffer From Rare Disease
March 8, 2010
GENE THERAPY REVERSES EFFECTS OF LETHAL CHILDHOOD MUSCLE DISORDER IN MICE
February 28, 2010
CHI SUPPORTS RESEARCH AND HOPE FOR PATIENTS OF RARE DISEASES
February 25, 2010
RARE DISEASE ADVOCATES UNITE TO TRANSLATE SLOGAN OF GLOBAL GENES PROJECT IN TIME FOR WORLD RARE DISEASE DAY!
February 25, 2010
reco® jeans SUPPORTS CHILDREN WITH RARE DISEASES
February 23, 2010
MILLIONS AROUND WORLD TO OBSERVE RARE DISEASE DAY ON SUNDAY
February 23, 2010
GLOBAL GENES PROJECT TO RAISE AWARENESS FOR MILLIONS OF CHILDREN LIVING WITH RARE DISEASE
February 1, 2010
GALAPAGOS TO FOCUS ON RARE DISEASES IN STRATEGIC SHIFT
January 26, 2010
THE PATIENT ASCENDANT
January 18, 2010
FUTURE OF NEWBORN SCREENING ENVISIONED: PROCEEDINGS NOW VIEWABLE ONLINE
January 7, 2010
HUNTING NEWBORN TESTS FOR SUPER-RARE GENE DISEASES
January 5, 2010
THE LONELINESS OF FIGHTING A RARE CANCER
January 5, 2010
DONATE GAMES CHARITY CONNECTS COMMUNITIES WORLDWIDE
December 21, 2009
DONATEGAMES TURNS USED VIDEO-GAMES INTO FUNDING FOR MEDICAL RESEARCH TO HELP KIDS
November 25, 2009
CHILDREN'S RARE DISEASE NETWORK RECEIVES LIFE TECHNOLOGIES FOUNDATION GRANT
November 17, 2009
BABY Z CURED OR RARE DISEASE IN 3 DAYS
November 11, 2009
SOCIAL NETWORKING SAVIORS: TWITTER, FACEBOOK USED IN EFFORT TO HELP SAVE A BABY'S LIFE
October 29, 2009
U.S. AND EUROPEAN RARE DISEASE ORGANIZATIONS SIGN STRATEGIC ALLIANCE
October 28, 2009
RARE DISEASE CENTER HOSTS SYMPOSIUM ON NEW STRATEGIES
October 27, 2009
RARE FIND
October 23, 2009
NEW FDA GROUPS FOR RARE, NEGLECTED DISEASES COULD SPEED PATH TO MARKET
October 12, 2009
ARNOLD NATIVE TO RUN ACROSS SAHARA DESERT
August 18, 2009
CAMP SUNDOWN SHINES IN THE BRONX
August 13, 2009
RESEARCHERS IDENTIFY NEW FUNCTION FOR PROTEIN MISSING IN DUCHENNE MUSCULAR DYSTROPHY
August 4, 2009
AMERICANS STRUGGLE TO PAY FOR HEALTHCARE: STUDY
June 22, 2009
DEAL REACHED TO CUT DRUG COSTS
June 20, 2009
ONE GIRL'S HOPE, A NATION'S DILEMMA
June 14, 2009
IN RARE DISEASE, A FAMILIAR PROTEIN DISRUPTS GENE FUNCTION
May 26, 2009
NEW INSTITUTE WILL STUDY RARE DISEASE
May 20, 2009
UNC-DUKE STUDY: IMPAIRED BRAIN PLASTICITY LINKED TO ANGELMAN SYNDROME LEARNING DEFICITS
May 10, 2009
TO MAKE PROGRESS IN RARE CANCERS, PATIENTS MUST LEAD THE WAY
May 9, 2009
MO. VOTES TO ADD 5 DISEASES TO NEWBORN SCREENINGS
May 9, 2009
SIGNATURE GENOMIC LABORATORIES DETECTS CHROMOSOME ABNORMALITIES IN INDIVIDUALS WITH PALLISTER-KILLIAN SYNDROME WITHOUT INVASIVE SKIN BIOPSY
May 7, 2009
MIRACLE FOR MATTHEW
May 5, 2009
SHRINKING BABY MAGGIE AGNEW BAFFLES DOCTORS
May 4, 2009
DONATEGAMES TURNS USED VIDEO-GAMES INTO FUNDING FOR MEDICAL RESEARCH TO HELP KIDS
By Michael Lafferty
"There is so much goodness coming with what we are doing"
Nothing touches the heart so much as children in need. Jim Carol knows that agony personally. In 2007 his 11-year-old son was diagnosed with Philadelphia Chromosome, a rare form of leukemia. The Carol family did what any family would do – they moved their family from California to Seattle and to a place where their son, Taylor, could get the best care, beginning with a bone marrow transplant.
As Jim wrote on the DonateGames Web site: "We ended up living in Seattle Children's Hospital for almost a year during his chemotherapy. Taylor and the other kids at the hospital were terribly sick, scared and isolated, but video-games played a big part in helping them get better."
It was from that experience that the idea for DonateGames was born. The idea is a simple one – games donated to the organization are resold and the proceeds are fed back to fund research. Here’s how it all works (as stated on the web site):
“By donating a game, you can receive credit on your taxes equal to or greater than the value you would have received by trading it in and know that your game went to help a good cause. By buying a game from Donate Games, you can get a game at a good price and know that your money will go to help a good cause, too.”
Operating with a volunteer staff, the proceeds from every sale “will go to support those suffering from orphan diseases around the world, searching for cures, providing caring networks and easing suffering.”
Video-game publishers like EA, Paradox Interactive, Telltale Games, Valve and NCsoft are partnered to the program as are other entities, such as public relations firms. There are more than 240 titles listed in the Web site’s store and more titles are ready to be scanned into the store’s inventory.
It keeps the Carol family hopping, but Jim took time to chat about the way the charity started and where he sees it going...
“When we were up there (in Seattle) is when I really saw how important video-games are to kids when they are isolated and sick,” he said. ”Being around and seeing when kids are isolated and stuck in a hospital for months on end – especially when they are having immune system challenges from their cancer treatment, they can’t hang out with anybody, they can’t do anything and video-games mean so much to the kids when they are in the hospital. I think that was the first thing.
“The second thing that happened was I found the video-game Re-mission. It turns out I had old friends that were working there and that’s a charity that is using video-game technology to help children who have cancer. They found that it helps with the chemo uptake, and so we became good friends with the people over at HopeLab, who make Re-mission and again, just fortifying how good video-games really are. And then the way the whole thing came together, Taylor had radiation (therapy) and couldn’t be around anybody and we had to live in a Ronald McDonald house because they have special buildings up there for kids who have no immune system. And when we were at the Ronald McDonald house it was startling to me how hard it is for most families, especially if the child has a rare and neglected disease. We all know about breast cancer, colon cancer and leukemia, but about 20 million Americans end up suffering from these rare and neglected diseases where you don’t have support groups. When we were living at the Ronald McDonald house, we weren’t looking at the menu anymore, we were eating the meal. We saw how hard it was on most families and how most families are just fighting for their kids’ lives.
“And it was a rainy, sad day in Seattle, which many are during the winter, very depressing and I was sitting in my car when a bus pulled up next to me with a huge donate-your-car sticker on the side of the bus. And that was the moment when I thought we can’t let that happen with video-games, we can’t let it become fractured and disjointed. We need to create a charity that is going to be trusted, that’s going to have a lot of discipline, that’s going to make sure that all of the money from the sale of used video-games goes to help sick kids.”
Too often people complain about video-games and point at them as though they were behind the ills of the world. Jim has an entirely different perspective.
“I’m part of that generation that created that stigma,” Jim said. “I’m a 50-year-old pop and I wasn’t a gamer. But I do believe in video-games, I don’t think they are bad, I think they are wonderful for education. My contemporaries jump to conclusions right away and think they (video-games) caused Columbine, and that’s just not the case. You will see, this year, a big part of what I’m going to be talking about in the media is that we need to change that opinion. Video-games are good and gamers are good, and they are benevolent, and they are kind and they are giving, caring people. And to be honest, 94% of the kids play video-games now so it won’t be an issue, probably, in 10 more years. But right now I think the general perception of a lot of people is incorrect.”
Jim cited the game Re-mission, which was financed by eBay founders Pierre and Pam Omidyar, that was proven to improve recovery time and scientifically proved to have positive results. Taylor, Jim’s son, was actually a spokesperson at the TED Conference where scientific facts were presented to support the findings that playing video-games – like Re-mission – was of value.
“You can affect your outcome with your mind,” said Jim. “If you can see the chemotherapy as your friend, not as your enemy and if you can embrace it, and if you can use your brain it is only going to help you get better.”
Taylor is doing well. He has to be tested all the time, but he is doing his part. He has been on the cover of the Make-a-Wish magazine, and he continues to speak about the charity. In fact he has spoken on behalf of 12 different charities.
“There is so much goodness coming with what we are doing,” Jim said. “I was the CEO of a global software company, I’ve run big companies, I retired young and I’ve never been around anything like this. I’ve never had people so willing to help, so kind and generous – it’s humbling. I have to tell you, this is the best thing I’ve ever done in my life and I’m just humbled. As long as we stay pure at this charity and make sure all the money goes to help the kids and help fight disease, this is going to be the next Make-a-Wish.
“The kids – the 17 to 33-year olds - all these charities that are out there, a lot of them are from their grandfather’s generation. Most of the big iconic charities were started after World War II – the Red Cross, the American Cancer Society. It’s time for a new charity to pop up for this new generation to get involved with that they can feel is their own. And I’m praying that we can start this, get all the infrastructure built up and that this is a charity … we are not saying ‘give us your money.’ We are saying ‘let’s recycle these idle used video-games.’ You are not buying from us, you are buying a game from a gamer.”
Donations are coming in from a lot of different sources. The Academy of Interactive Arts and Sciences has made a donation. A donation to the charity came in from the embassy in Kabul, Afghanistan and another from Dubai.
“I think if we just continue to keep our eye on the prize,” Jim said, “to communicate what we really stand for and to create a brand that people know can be trusted that almost every single penny that is raised is going to go to help sick kids, their families or to help find a cure for a rare disease. If we do that, we’re going to be Ok.”
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