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
ARNOLD NATIVE TO RUN ACROSS SAHARA DESERT
August 18, 2009
Few people consider the Sahara Desert and say, "Perhaps I'll run across that."
But that's just what Arnold native George Chmiel Jr. did. In October he'll run 155 miles across the sands of western Egypt, braving 140-degree temperatures, scorpions and exhaustion to raise money and awareness in honor of a 3-year-old girl born with a rare illness.
"I'm going to take on this challenge. I want to make it count, impact someone's life," Chmiel said.
The little girl is Luci Horvath, the daughter of a friend Chmiel met while working at Merrill Lynch about four years ago. Her family lives in Texas.
Luci was born with panhypopituitarism, a rare, life-threatening condition that prevents her body from making hormones that affect everything from growth to heart and lung function to immunity from common colds. With steady doses of medication, she should be able to lead a mostly normal life, but she'll never be able to run the kind of race Chmiel is taking on, her mother said.
"It's like stepping out for her. She'll never be able to do that herself, but George doing this in her name means so much to us," Jolie Horvath said. "I can't wait until she's old enough to understand. We'll tell her what George is doing for her."
Chmiel, who now lives in Boston, said he was inspired first by the love and strength of the Horvath family, and then by the people who have come forward to support him.
By running the Sahara race, he's trying to raise $25,000 for the MAGIC Foundation, a nonprofit organization that supports families with children who have growth conditions. So far, he has raised about $10,000.
Chmiel wasn't always a runner. At St. Mary's High School in Annapolis, where he graduated in 1999, Chmiel played baseball, lacrosse and other sports. But about three years ago he injured his wrist and never fully recovered. Unable to play as he used to, he turned to running and has completed eight marathons in the past two years.
But the Sahara race is something else. It's organized by RacingThePlanet, which also runs races through the Gobi Desert in China, Chile's Atacama Desert and Antarctica.
To prepare, Chmiel has stocked up on blister kits and a headlamp, and has been practicing on steep trails for four to five hours at a time while toting 25 to 30 pounds of gear. Recently he took a practice run in California's Death Valley, despite one park ranger's attempt to stop him.
"You're in this barren, arid inferno. It's hard to breathe, then you put the pack on with the weight, and it's incredibly difficult," Chmiel said of Death Valley. "But those are the conditions I'll be in out in the Sahara."
Still, getting in shape for the race concerns Chmiel less than the desert, where he'll have to run for long stretches and sometimes alongside the snakes and scorpions that emerge at night.
That also worries Suzan Chmiel, who said she'll be reading her son's Sahara blog entries from her home in Arnold.
"Of course we're concerned, but along with the concern goes a great deal of pride," she said. "Pride in his desire to do something like this, and to take something that's a challenge in his own life and turn it into something for Luci."
For more information or to donate, visit the Web site at www.luciandgeorge.com.
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