The National Organization for Rare Disorders (NORD)


Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,150 diseases.

Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,150 diseases.

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Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

Check here to read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

News Briefs

Saving Andy Martin's Cells

In 2004, a medical student at Tulane University in New Orleans named Andrew Martin helped NORD write a report for its Rare Disease Database on a rare form of cancer known as sinonasal undifferentiated carcinoma (SNUC). He wanted to increase awareness of this little-known disease.

Today, that report stands as a reminder of the dedication of this young researcher and of his colleagues’ heroic efforts to salvage his work in the aftermath of Hurricane Katrina.

Andy Martin—in addition to being a third-year medical student—was an oncology patient. He suffered from the same rare cancer that he was studying—SNUC—which affects the nasal cavity and nearby sinuses. Its first symptoms are a bloody nose, runny nose, bulging eye, or chronic infection. In some cases, SNUC has been associated with prior irradiation for other cancers, but it has also appeared in people who have had no previous irradiation.

Because SNUC is extremely rare, there has been little research on it. Its treatment has no firmly established protocol but relies, instead, on therapies used for other cancers. At Tulane's Cancer Center, Andy Martin had donated tissues from his own tumor for research that, he hoped, might lead to a treatment for SNUC. He and several colleagues were working under the direction of Tyler Curiel, MD, MPH, chief of hematology and medical oncology.

About six months after Andy co-authored the report for NORD, he succumbed to his disease. However, the tissues he had donated still provided hope that others with SNUC might have a brighter future.

Then, in August 2005, Hurricane Katrina roared across the Tulane campus. In the stark aftermath, with destruction all around them, Dr. Curiel and another cancer researcher, Dr. Michael Brumlik, set out to save Andy's cells... and Tulane’s SNUC research program. Because there was no power in their building, they decided to move the freezers in which Andy’s cells were stored to a nearby building that had working generators.

Pulitzer Prize-winning journalist Amy Dockser Marcus described their efforts as follows in a Wall Street Journal article:

“The freezers were huge,” weighing as much as three or four kitchen refrigerators. “The two started pushing the first one down the hall, trying to get it into the elevator before the emergency power in their building went out. It was dark in the hallway, with the temperature above 100 degrees. They worked by flashlight.”

When they got the first freezer to the other building, it was too big to fit through the door so they carried the vials individually, stuffing them into freezers in other labs. They carried hundreds of boxes of vials, up and down stairways, in the dark aftermath of the storm.

A few hours later, the generators in the second building failed. Again, Drs. Curiel and Brumlik carried boxes of vials through the darkened passageways, this time to an area where there were three liquid nitrogen tanks that, they hoped, would keep the samples at the required temperature for a few weeks without power. Then, National Guardsmen told them they had to leave.

As soon as he was out of New Orleans, Dr. Curiel began to work on getting back in, to save Andy’s cells. Others rallied behind him: The University of Texas Southwestern Medical Center donated 800 pounds of dry ice. Trident Aviation Services donated the use of its corporate jet, and Fisher Scientific International provided insulated containers.

Eventually, Drs. Curiel and Brumlik were taken by the Trident jet to New Orleans and by helicopter to the roof of a hospital. At the medical school, they were told by guards that they could stay for four hours.

“Working in the dark,” Marcus wrote in her Wall Street Journal article, “they went back to the three liquid nitrogen tanks. Shining their flashlights on the tanks, they popped the top on the first one. A big puff of white vapor hit them in the face. Dr. Curiel reached in and pulled out a rack containing boxes of vials.” The very first box was labeled “SNUC”.

Andy Martin’s cells were placed in donated cooler space at UT Southwestern and Baylor University College of Medicine but recently returned to Tulane. For now, at least, Tulane’s research on this very rare cancer has been saved.

“We still face many challenges,” said Susan Sarver, RN, who worked with Andy at Tulane, “"but we’re very grateful for what Dr. Curiel did, and we’re determined to keep this research going.”

For more information about SNUC research at Tulane, call Susan Sarver, RN, at (504) 988-8840 or write to bounce@tulane.edu.

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Last modified Friday, March 21, 2008