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The Children's Inn at NIH Timeline

This timeline chronicles and celebrates The Children’s Inn at NIH’s crucial milestones, events and achievements. These include the selfless contributions of more than 14,500 children, teens, young adults and their families who have stayed at The Inn while they are participating in pioneering medical research studies at the National Institutes of Health.

The 2000s

2000

MEDICAL ADVANCEMENT

Treating Lipodystrophy

Dr. Phil Pizzo, chief of the National Cancer Institute’s pediatric branch, meets Carmala Walgren, wife of Rep. Doug Walgren (D-PA), In long-term, ongoing clinical trials that began in 2000, National Institute of Diabetes and Digestive and Kidney Diseases scientists find that leptin is an effective treatment for pediatric patients with lipodystrophy, a rare metabolic disease characterized by the loss of fatty tissue in parts of the body. As a result of the scientists’ work, leptin is approved in 2014 as a treatment for both adults and children with lipodystrophy.

2003

MEDICAL ADVANCEMENT

Distinguishing Severe Mood Dysregulation From Pediatric Bipolar Disorder

President George H.W. Bush and first lady Barbara Bush, Health Multiple studies conducted by NIMH researchers, with the essential involvement of children and parents who stayed at The Children’s Inn, contributed to the understanding of irritability, defined as impairing temper outbursts and angry mood, as an important and impairing aspect of childhood mental illness. These studies show that chronic irritability is distinct from pediatric bipolar disorder, a finding with important implications for treatment and prognosis that led to the clinical conceptualization of severe mood dysregulation in 2003.

2004

OUR HOME

The Inn’s New Wing Adds Capacity

The Inn’s New Wing Adds Capacity

The new addition increases guest rooms from 37 to 59 and hails a community kitchen, dining and lounge areas, an exercise room, a multipurpose room and other family spaces. Thanks to the expansion made through a generous gift from Merck, The Inn can better meet the evolving needs of families and older children by making it feel just a little more like home.

2004

Our Home

Creating a Space for Teens

teen lounge

The new teen lounge provides children ages 13 and older with an age-appropriate space to play, study and hang out. The room includes a gaming console and chairs, a large-screen TV, an oversized sofa, an arcade game, a foosball table and a variety of board games.

2004-2005

OUR INN FAMILY

Family Wellness Program

Family Wellness Program

Understanding the importance of taking care of the entire family, The Inn adds new staff positions to launch the family wellness program with the goal of focusing on the needs of parents and caregivers—offering massages, cooking classes and other support programs for caregivers.

2004

Our Home

Emphasizing Educational Support

Emphasizing Educational Support

With the addition of a brand-new education center, The Children’s Inn is able to better support the academic needs of children and young adults while they undergo treatment for rare diseases at NIH.

2008

MEDICAL ADVANCEMENT

DOCK8 Immunodeficiency Syndrome

Scientists at the National Institute for Allergy and Infectious Diseases identify that DOCK8 deficiency is associated with a novel variant of combined immunodeficiency.

2008

OUR INN FAMILY

Karly and Kelsey

Karly and Kelsey

When two of her daughters were faced with puzzling infections, Tammy brought them to NIH for diagnosis and treatment, where they contributed to the identification of DOCK8 deficiency. While Kelsey passed away from complications after undergoing a stem cell transplant, Karly became the first DOCK8 patient to survive a non-matching transplant. Thanks to the two sisters, other children with DOCK8 now have the chance to be cured. Read more about the sisters’ long journey to a diagnosis and a treatment.

2008

OUR INN FAMILY

Viola “Vi”

Viola “Vi”

Our very first four-legged friend joins The Inn and quickly becomes our most popular staff member. As a therapy dog, Vi spreads cheer to The Inn, decreasing residents’ stress levels and improving their mental outlook. Therapy dogs are proven to offer several health benefits—that’s why Vi attends family activities and interacts with children daily.

2008

OUR HOME

Building The Inn’s Endowment

A generous $10 million grant creates the “sanofi-aventis Legacy Fund” to help ensure The Inn ‘s long-term viability.

Building The Inn’s Endowment

2008

MEDICAL ADVANCEMENT

2008 Immunotherapy for Ewing’s Sarcoma and Rhabdomyosarcoma Favorable

National Cancer Institute researchers treating pediatric cancer patients with Ewing’s sarcoma and alveolar rhabdomyosarcoma find that consolidative immunotherapy integrated into a multimodal regimen for chemoresponsive cancer is favorable for survival with minimal toxicity.

2008

OUR HOME

Adding a Sport Court

Adding a Sport Court

The sport court adds a lighted outdoor multi-sport area for families to play tennis, basketball, hockey and many other sports.

2009

OUR HOME

Woodmont House

Woodmont House

To help long-term families staying at The Inn integrate into the community, The Children’s Inn purchased Woodmont House in 2009 thanks to a generous gift from Merck. Located on land adjacent to the NIH campus, the residence could accommodate six families at a time. The Children’s Inn sold the residence in 2018 after being granted use of a house located on the NIH campus and directly across from The Children’s Inn. Proceeds from the sale are being reinvested in renovating the second on-campus residence, slated to open in 2025 to serve young adult residents.

2009

MEDICAL ADVANCEMENT

Improving the Quality of Life for Children With Osteogenesis Imperfecta

Osteogenesis imperfecta, also known as brittle bone disease, is a rare disorder that weakens bones significantly, leading to frequent fractures. The Eunice Kennedy Shriver National Institute of Child Health and Human Development has researched OI for more than 30 years, finding, among other things, that pamidronate treatment confirms vertebral gains in children.

2009

OUR INN FAMILY

Meet Kristal

At only 8 months old, Kristal is one of the first NIH patients to stay at The Inn while she participates in the ongoing trials and studies for osteogenesis imperfecta. She credits an NIH trial with enhancing her bone density to the point that she was able to make her dream of working as a nurse come true.