PRESS
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
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
CAMP SUNDOWN SHINES IN THE BRONX
August 13, 2009
This column appears in the August 24 issue of ESPN The Magazine.
The team facing Yankees ace A.J. Burnett a few weeks back at Yankee Stadium has to go down as the oddest in baseball history.
For one thing, it plays only at night. The players have no choice. Even one minute of sunshine can kill them.
They're from Camp Sundown, in Craryville, N.Y., and they live life on the other side of the sun. All of them have the rare disease known as XP -- xeroderma pigmentosum. If kids with XP catch the slightest UV ray, they can and do develop cancerous tumors. Even fluorescent lights fry their skin like boiling oil. Most of them don't live to be 20.
So how could they take the field at Yankee Stadium? Because this was 3 a.m. Superstar right-handers should be tucked into bed by then, yet there was Burnett, throwing Wiffle-ball splitters and chasing down line drives.
There is no cure for XP. If you're born with it, you're one in a million. There are only 250 known cases in the U.S. Until Camp Sundown was founded 14 years ago by Caren and Dan Mahar, whose daughter Katie has the disease, few of these kids had met anyone else with XP. For most of them, Yankee Stadium was the first MLB ballpark they'd ever seen -- and probably it will be the last.
Getting here wasn't easy.
To make the seven-foot trip from the front door of Camp Sundown to the curtained bus with double-tinted windows that took them to Yankee Stadium, all the XPers had to wear hats, tinted eye shields, vats of sunblock, turtlenecks, long-sleeve shirts, long pants and gloves. Even with all that, they ran.
Because they couldn't leave until the sun was almost down, and because it was a three-hour drive, they knew they'd be able to see only the last couple of innings of the game. But then it rained, causing a more-than-two-hour rain delay. While the rest of the crowd cursed, the campers rejoiced. How lucky can you get? The bus arrived just before the first pitch. "It was almost like the game was waiting for them to show up," Yankees GM Brian Cashman said. "That kind of gave us goosebumps."
To get the kids out of the bus and into their VIP suite for the game, Yankees media-relations director Jason Zillo -- the man who dreamed up the whole night -- had to take them on a rat's route of back staircases and tunnels to avoid any fluorescent lights. After the Yankees beat the A's 6-3, the stadium lights had to be dimmed to 30 percent. Once they were, all the kids came running onto the field with smiles that could've lit up the Bronx.
"It's cool to be part of this," said Burnett, whom Zillo forced to leave at 3:15. "And it's kind of mind-boggling. I can't imagine if I couldn't take my children outside."
Eleven ghostly-pale XP campers took the field, including Yuxnier Beguebara, who is coming up on 71 operations, and Kevin Swinney, who has had over 200, and the rest of them, grinning through faces operated on so many times they seem to be covered in plastic. Feel sorry for them if you want, but they have one thing most kids will never have: For one night, the Yankees' field was theirs.
They high-fived Derek Jeter, ran madly around the bases and wallowed in the instant carnival the Yankees had set up -- from the magician to the bouncy castle to reliever Alfredo Aceves strolling the yard, strumming his guitar while Cashman sang the Police's "Message in a Bottle." For one night, at least, these kids found out they are not alone in being alone.
Not that they don't play baseball at Camp Sundown. They do -- at midnight, to the accompaniment of owls and bullfrogs -- against the local fire department. "We're pathetic," says Caren Mahar. "But we always play."
By 3:30, it was time to go, and there was no time to waste. They had to make it back to Camp Sundown before sunup. Welcome to life lived like a vampire.
On board the bus, Katie Mahar, 17, was whipped. Her hearing is down to 50 percent, and her vision is going fast, and her words are starting to lack vowels. But anybody could understand her as she kept saying, "That was a blast! What a blast!"
And I keep thinking of my friend Jason Zillo and the 14 years it took him to make this night happen.
"I saw one little girl," he said afterward, exhausted. "When the centerfield wall opened and the whole carnival started coming out -- she just started jumping up and down, over and over. She wouldn't stop, she was so excited. People wanted to thank me. But that's all I needed."
And you thought the warmest light came only from above.
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