NIH Family Members Giving Back: Kafui Dzirasa

Kafui Dzirasa at UMBC

Caption: Kafui Dzirasa (front center) with the current group of Meyerhoff Scholars at University of Maryland, Baltimore County.
Credit: Olubukola Abiona

Kafui Dzirasa keeps an open-door policy in his busy NIH-supported lab at Duke University, Durham, NC. If his trainees have a quick question or just need to discuss an upcoming experiment, they’re always welcome to pull up a chair. The donuts are on him.

But when trainees pop by his office and see he’s out for the day, they have a good idea of what it means. Dzirasa has most likely traveled up to his native Maryland to volunteer as a mentor for students in a college program that will be forever near and dear to him. It’s the Meyerhoff Scholars Program at the University of Maryland, Baltimore County (UMBC). Since its launch in 1988, this groundbreaking program has served as a needed pipeline to help increase diversity in the sciences—with more than 1,000 alumni, including Dzirasa, and 270 current students of all races.

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NIH Family Members Giving Back: Charlotte Phillips

Charlote Phillips and members of a Mennonite community

Caption: Charlotte Phillips during a visit to a Missouri Mennonite community.
Credit: Richard Hillman

At 1 a.m., most people are fast asleep in their beds. But Charlotte Phillips sometimes finds herself up at that odd hour, waiting anxiously in a deserted Missouri parking lot far from her home. Phillips drives there to meet a contact for a very special delivery: a packet of cheek swabs and blood samples from a newborn Mennonite baby at risk of a life-threatening genetic condition called maple syrup urine disease (MSUD).

For more than two decades, Phillips, an NIH grantee at the University of Missouri, Columbia, has volunteered to ensure that the DNA in these swabs and samples is tested for MSUD within hours of a baby’s birth. If found to be positive for the condition, the baby can receive a needed special formula. Without it, the baby would suffer brain damage within days from its inability to break down amino acids in protein-rich foods, including breast milk and standard infant formula. Hurrying off at a moment’s notice isn’t always convenient, but Phillips, who is not Mennonite, feels a personal calling to do it. She wouldn’t want any babies to die.

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NIH Family Members Giving Back: Diane Baker

In the kitchen of The Children's Inn

Caption: My wife Diane inspired me and my staff to volunteer to make dinner for patients and their families at The Children’s Inn at NIH.
Credit: NIH Record

My blog usually celebrates biomedical advances made possible by NIH-supported research. But every August, I like to try something different and highlight an aspect of the scientific world that might not make headlines. This year, I’d like to take a moment to pay tribute to just a few of the many NIH family members around the country who, without pay or fanfare, freely give of themselves to make a difference in their communities.

I’d like to start by recognizing my wife Diane Baker, a genetic counselor who has always found time during her busy career to volunteer. When I was first being considered as NIH director, we had lots of kitchen table discussions about what it might mean for us as a couple. We decided to approach the position as a partnership. Diane immediately embraced the NIH community and, true to her giving spirit, now contributes to some wonderful charities that lend a welcome hand to patients and their loved ones who come to the NIH Clinical Center here in Bethesda, MD.

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Clinical Studies in Your Own Backyard

Map of the U.S. indicating number of active clinical trials by state

Map of clinical trials in the U.S. as of Feb. 7, 2013
Source: ClinicalTrials.gov

NIH conducts clinical research studies for many diseases and conditions, including cancer, Alzheimer’s disease, allergy and infectious diseases, and neurological disorders. What’s more, this work is being carried out in every state of the nation, as you can see from this interactive map showing clinical studies supported by NIH and others.

Before you start exploring this map, let’s take a moment to review the basics. A clinical study involves research using human volunteers that is intended to add to medical knowledge. One common type of clinical study, called a clinical research trial, looks at the safety and effectiveness of new ways to prevent, detect, or treat diseases. Treatments might be new drugs or new combinations of drugs, new surgical procedures or devices, or new ways to use existing treatments.

If you’re interested in taking part in a clinical study, a terrific place to start is ClinicalTrials.gov, which is a service of NIH. This searchable database lists more than 139,000 federally and privately funded clinical studies in the United States, as well as around the world. For each study, the database provides information on the purpose of the research, who may participate, where the study is being conducted, and who to call or e-mail for more details. To help you in your quest, we’ve pulled together some handy search tips, along with some real-life stories from both volunteers and researchers.

Finally, please keep in mind that ClinicalTrials.gov is just a starting point. Any information that you find there should be used conjunction with advice from your doctor or another health care professional.