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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