A year ago, Tedi, 55, loved to bow hunt elk near her home in Montana. She looked the picture of health, but she left her job as a respiratory therapist because she suffered severe bouts of shortness of breath. Recently, on her first visit to the NIH Clinical Center, she pulled a portable respirator behind […]
Rachel from Indiana came to the NIH this week for the first time with her husband Richard. The 45-year-old mother of four teenagers has a rare autoimmune disease that is progressively life-threatening if untreated. After tests and conferences with her medical team, Rachel is excited that new treatment options are open to her. She hopes […]
Patients are the key to successful research at the National Institutes of Health. So, too, are the dedicated researchers with whom they partner. Together, they pioneer lifesaving discoveries. Dr. Carsten Bonnemann says the support to patients from Friends at NIH is essential! “The NIH covers many costs, but we can’t cover all the financial hardship […]
Jackson, a Portland, Oregon teen-ager, was suffering from a rare genetic disease before it even had a name. He was just two when his mother first noticed his symptoms, swelling in his legs. Later, he also experienced hearing loss and a severe vulnerability to infections. It would be years before the genetic testing needed to […]
Eduardo, 59, a successful vegetable producer lost his business and home in Texas due to a rare eye disorder that causes the muscles around his eyes to spasm and his eyes to close involuntarily. The disorder has left him functionally blind. The unusual disease, blepharospasm, initially attacked him without warning when he was driving with […]
Meghan has a rare and life-threatening genetic disease, Dock8 deficiency. The disease, itself, was only recently discovered in 2009. Like many genetic diseases, the discovery and possible treatments were made possible by the mapping of the human genome led by Dr. Francis Collins, now Director of the NIH. All her life, Meghan has had hundreds […]
20 year-old Danielle has been a patient at the National Institutes of Health (NIH) since she was 10. She’s now facing a kidney transplant, and the life-altering chance to be free of dialysis. She’s one of the many patients and families Friends of Patients is helping this year as they navigate critical treatment at the […]
Justapra Singh holds the distinctive title of Special Olympics Golf Gold Medal Winner in April, 2018 at Macau, China. The 16-year-old from Texas, nicknamed Jus, joined Friends’ last week to play golf and speak at our golf tournament luncheon, along with his father, Dr. Mukhbir Singh. Jus stood out on the course in his fluorescent […]
Heather, a 45-year-old single mother from Hartford, Connecticut, has good news! (Friends brought you Heather’s story in January). She suffered chronic illnesses and multiple hospitalizations for five years, but doctors couldn’t figure out what was wrong. Then she came to the NIH, was diagnosed with a rare blood disorder – HES – and enrolled in […]
