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Friends at NIH  Helps Deliver Hope

Anthony P. is a postal carrier. So he  knows  that old saying -“neither rain, nor  sleet, nor gloom of night” – as well as anyone. Unfortunately, Anthony has an illness that can painfully keep him from his appointed rounds and put his life on hold.

Anthony has Sickle Cell Disease (SCD), a condition in which a genetic mutation affects the red blood cells that carry oxygen from the lungs to all parts of the body.  Normal red blood cells are round and flexible, but sickle cells have hemoglobin that forms stiff rods or sickles.  The misshapen cells block the flow of blood through the body, causing severe outbreaks of pain. The only cure is a stem cell transplant.

Anthony came to the NIH in 2005 with high hopes of one day living free of the disease. He underwent two stem cell transplants – a year apart – but both failed.  Late in 2016, he prepared for his third. But his condition was taking an ever greater physical and financial toll on him and his family.

Because of many clinic visits, the bone marrow harvest process and admissions for severe episodes of pain, Anthony had used up all of his sick and personal leave. His wife, also a postal worker, took a second job to pay the utility and phone bills, but even with her government salary, they feared they would be evicted from their apartment.  They asked the apartment management to let them delay their rent payments but were turned down.

That’s when Friends at NIH stepped in and paid Anthony’s rent for three months. “It took a huge weight off my shoulders,” he told us. “I can’t even express the joy that I feel. I called my wife as soon as I heard and she was screaming on the other end of the phone.” Anthony says the support from Friends gave him and his wife peace of mind – with the financial burden lifted, they could focus on his treatment and healing.

Anthony was discharged from the Clinical Center in January and, although he is experiencing some graft-versus-host disease complications, he has returned to work. His challenge to Friends at NIH — remember that even steps that can seem small to some can be transformative for patients in need. “Continue your work. You are changing people’s lives. It might be a 2-foot jump for you, but it is a 30-foot jump for me.”

Anthony is a hero enrolled in one of the 1600 cutting-edge clinical research trials currently in progress at the Clinical Center that potentially lead to discoveries and future cures.

 

Discovery Film Premiere
First in Human: The Trials in Building 10

Friends  at  NIH celebrated the Discovery and NIH premiere film screening of First in Human: The Trials in Building 10, May 2, at the Reagan Building and International Trade Center Amphitheater.  The film is an unprecedented, behind-the-scenes look at the lifesaving research and ongoing treatment trials at the Clinical Center.  The three-part docuseries is scheduled to air in August this year.  Sign up for our newsletter on our website to learn more.


Pictured (left to right): Jerry Sachs, President of the Board of Friends at NIH, Heidi Grolig, CEO of Friends, Diane Baker, Vice President of Friends, Dr. James Gilman, CEO of NIH’s Clinical Center, and Dr. Francis Collins, Director of NIH.

Jim Parsons Set to Narrate Discovery Channel’s Documentary Series ‘First In Human’

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The Friends of Patients at the NIH