The Washington Post

Saving the lives of patients with rare blood diseases

When Princeton University football star Jordan Culbreath was diagnosed in 2009 with the rare and potentially deadly blood disorder known as aplastic anemia, his prospects looked bleak. The life- threatening disease was wiping out the cells in his bone marrow, including red blood cells that carry oxygen, white blood cells that fight infection and platelets that help clot the blood.

Culbreath was fortunate to have found his way to the National Institutes of Health and a team of expert physicians led by Dr. Neal S. Young, where he received immune suppressant therapy and made a full recovery. He returned to the gridiron for the 2010 season and later graduated from college.

“I’m very lucky, I know that,” Culbreadth said last February when he received an award from an organization that seeks to raise awareness about rare diseases.

Culbreath’s recovery, however, was more than luck. It was the result of years of painstaking research and clinical testing led by Young and his colleagues, who are widely credited with pioneering the development of the treatments for patients with aplastic anemia and related syndromes.

The therapies tested by Young, the chief of the Hematology Branch of the National Heart, Lung and Blood Institutes at NIH, have resulted in a dramatic increase in survival rates for those suffering from aplastic anemia. When Young graduated from medical school in 1971, for example, almost all patients who developed severe aplastic anemia died within just a few months. Today, the survival rate is more than 70 percent.

(Ernie Branson/NIH)

Because of Young’s efforts, his clinic at NIH is considered one of the world’s major referral centers for bone marrow failure syndromes, including aplastic anemia. This disease strikes about 600 to 900 people a year in the United States.

“Neal Young is a great scientist and he has done an enormous amount of good in terms of aplastic anemia,’ said Dr. Arthur Nienhaus, a prominent physician at St. Jude Children’s Research Hospital in Tennessee and Young’s former boss at NIH.

“He is truly one of the great investigators of our generation in terms of hematology,” said Nienhaus.

At NIH, Young combines direct patient care and clinical trial research with basic science laboratory work in cell biology, molecular biology, virology, immunology and population-based epidemiologic studies.

Young said the NIH gives him great “intellectual freedom” to follow the science, undertake a wide range of investigations and engage in “transformative work” that provides benefits to the medical community and society. At the same time, Young said, he is able to have direct contact with patients, “take care of them in a very special way” and fulfill his role as a physician.

“I get great satisfaction seeing patients doing so much better,” said Young

In addition to researching and making breakthroughs on the immunologic and genetic bases of aplastic anemia, Young’s laboratory has studied and identified the B19 parvovirus, which can infect the bone marrow cells, and has developed a vaccine that is now in clinical trials.

Young also has been involved clinical and basic research in the areas of bone marrow failure, gene therapy for blood diseases and stem cell transplantation. He has published nearly 300 research articles and more than 100 reviews and book chapters; written or edited ten monographs, including a novel textbook of hematology; and mentored dozens of post-doctoral fellows.

Nienhus said Young has “a brilliant, incisive mind, assimilates knowledge very rapidly, comes back with original thoughts and is dedicated to understanding disease.” At the same time, he said, Young maintains an engaging personality and demonstrates extraordinary leadership.

This article was jointly prepared by the Partnership for Public Service, a group seeking to enhance the performance of the federal government, and Go to to nominate a federal employee for a Service to America Medal and to read about other federal workers who are making a difference.

The Freddie Gray case

Please provide a valid email address.

You’re all set!

Campaign 2016 Email Updates

Please provide a valid email address.

You’re all set!

Get Zika news by email

Please provide a valid email address.

You’re all set!
Show Comments
The New Hampshire primary is Tuesday. Get caught up on the race.
New Hampshire primary: What to expect
New Hampshire will hold a traditional primary just eight days after the Iowa caucuses. Polling in the Granite state has historically been volatile in the final weeks before the primary. After the Iowa caucuses, many New Hampshire voters cement their opinions.
The Post's Ed O'Keefe says ...
Something has clicked for Bush in New Hampshire in the past few days. What has transpired by no means guarantees him a top-tier finish in Tuesday’s Republican primary here, but the crowds turning out to see him are bigger, his delivery on the stump is crisper and some of his key rivals have stumbled. At the least, the developments have mostly silenced talk of a hasty exit and skittish donors.
The feminist appeal may not be working for Clinton
In New Hampshire, Sen. Bernie Sanders is beating Clinton among women by eight percentage points, according to a new CNN-WMUR survey. This represents a big shift from the results last week in the Iowa caucuses, where Clinton won women by 11 points.
New Hampshire polling averages
Donald Trump holds a commanding lead in the next state to vote, but Marco Rubio has recently seen a jump in his support, according to polls.
New Hampshire polling averages
A victory in New Hampshire revitalized Hillary Clinton's demoralized campaign in 2008. But this time, she's trailing Bernie Sanders, from neighboring Vermont. She left the state Sunday to go to Flint, Mich., where a cost-saving decision led to poisonous levels of lead in the water of the poor, heavily black, rust-belt city. 
55% 40%
Upcoming debates
Feb. 11: Democratic debate

on PBS, in Wisconsin

Feb 13: GOP debate

on CBS News, in South Carolina

Feb. 25: GOP debate

on CNN, in Houston, Texas

Campaign 2016
State of the race

To keep reading, please enter your email address.

You’ll also receive from The Washington Post:
  • A free 6-week digital subscription
  • Our daily newsletter in your inbox

Please enter a valid email address

I have read and agree to the Terms of Service and Privacy Policy.

Please indicate agreement.

Thank you.

Check your inbox. We’ve sent an email explaining how to set up an account and activate your free digital subscription.