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.

Return to the news page.


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