Aaron’s Story – Bold Treatment and Strong Family Support

Aaron H. has suffered from a rare genetic deficiency since he was two years old. His entire life, he had numerous pneumonias and other serious illnesses, yet he didn’t know why. Then, finally he was was diagnosed with Rag 1 deficiency at the NIH six years ago. “It’s a huge relief to know your enemy […]

Ana Continues to Make a Lasting Impact

For patients in lifesaving treatment studies and their caregivers, it’s hard to take a break. Days are often long and unpredictable. Ana’s Impact continues to provide emotional and social support to families by providing a break – outings to a restaurant, a movie, even a trip to the mall. Patients tell us that even a […]

Daniel’s Story – The Gift of Housing

Cooking is Daniel’s passion and work. A chef and restaurant consultant from Lawton, OK, Daniel, 53, is stirring up a special stovetop meal in the comfort of an apartment, sponsored by Friends’ donors at The Flats 8300 near the NIH campus. Daniel feels good and says standing, including at the stove, is part of his […]

Gracias to The Flats 8300 for the Fundraiser Especial

The Flats 8300 Apartments, managed by The Bozzuto Group, sponsored a Spanish themed benefit for Friends at NIH. Debra Parker, Director of Residence Services and producer of the event, explains how the benefit originated. “We love having you as residents here in the building and we really believe in supporting what you do, so we […]

Honoring Fathers – and this Special Dad

Ron is the father of six children – a mix of biological, step and adopted. Amazingly, five are teenagers, all looking to him for guidance in challenging years. The 42-year-old Chicagoan has kidney cancer which makes him keenly aware of his mortality and his desire to be a good role model for his family. He […]

Mother Knows Best…it’s better to give than receive

Please consider honoring your mother with a special gift to help patients and their families this Mother’s Day. Konjit has lung cancer. She’s enrolled in a treatment trial at the NIH in hopes of prolonging her life. Her greatest pride is her 21-old-daughter, a student at Stanford, and her 19-year-old son, also in college. She […]

Race for RP Dedicates June to ‘Friends with Relapsing Polychondritis’

Race for RP helps patients travel to the National Institutes of Health.
In celebration of the outstanding global awareness generated by the Race for RP logo flying on the No. 63 Ed Carpenter Racing Scuderia Corsa Chevrolet driven by Ed Jones at this year’s Indianapolis 500, Race for RP has dedicated the month of June to helping its friends who have relapsing polychondritis or “RP”.

Matthew and his wife, Dana

Matthew’s Drive for a Cure

Matthew and wife, Dana, both worked two jobs until recently. He has always been too proud and independent to need or ask for help, Dana explains. But his journey from his home near Baltimore to the National Institutes of Health to enroll in a treatment study tipped the scales of challenges and they reached out […]

Sierra’s Comeback

Sierra smiled – and shed a few tears — as she posed recently with her physician, Dr. Mark Ball. After a round of tests and a sleepless night, she’d gotten the good news that she’s cancer free. It’s too soon for her to consider herself cured – that takes five years – but she was […]

CORT Supports Patients

Patients and their families who stay in Friends’ apartments near the NIH will be greeted by gift bags provided by CORT. A big thanks to Marty Hyson, Senior Account Representative with CORT, Berkshire Hathaway Company for furniture rental, at the Rockville, MD location. “I know a lot patients are struggling financially, so I thought it […]

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