Jackson Thanks NIH and Friends

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 […]

Saving Eddie’s Sight

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’s Search for a Cure

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 […]

Danielle is Counting on Us

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 […]

Grateful Patient and Family Program

Kathleen and Dr. Chris Adelman walk miles inside the Clinical Center daily when they are at the NIH for appointments or hospitalizations. They try to clock 10 to 16K steps a day. On a recent tour of the floors, they saw the Friends at NIH banners, and stopped in to ask how they can help. […]

World Champion Teen Golfer/NIH Patient and his Dad

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 […]

Even Better than Flowers – Give Mom a Gift That Can Save Lives

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 […]

Hope for Amber

by Aubrey Rumore Amber, 8, has no problem making her way through the long, wide hallways of the hospital. There’s a cape-like cover draped over the back of her walker embroidered with the bold nickname, “SUPER GIRL.” At every turn, the gregarious, Super Girl Amber is greeted by hugs and hellos. At the age of […]

The First Patient in a Unique Research Study

by Aubrey Rumore John, 22, from San Antonio, TX, is the first and only patient enrolled in a groundbreaking treatment protocol for Aplastic Anemia at the National Institutes of Health (NIH) Clinical Center. He remembers well the day he was diagnosed. It was the fall of 2015. He was on his way to his little […]

The Waiting List for Friends’ Apartments is Growing!

In 2017, Friends at NIH provided families 859 NIGHTS in our apartments near the NIH Clinical Center. At average per diem rates of hotels in the area, this saved families, $128,850! Housing support is more than 60% of our program services provided to patients and their families. The need is great and the waiting list […]

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