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Because Every Kid Deserves to Feel Special: A Profile of Hope for Henry Foundation

August 2013
Laurie Strongin

Henry Strongin

10,445 smiles and counting

Since 2003, Washington DC-based Hope for Henry has made life better for more than 10,000 kids bravely fighting cancer and life-threatening blood diseases. While undergoing bone marrow transplants, chemotherapy, and other life-saving procedures, 368 kids have had incredible in-hospital birthday parties; 1,036 kids were entertained and uplifted by gifts of brand new iPads or portable DVD players and gaming systems; 1,675 princesses, superheroes, witches and goblins trick-or-treated in the hospital wearing brand new costumes; 286 girls and moms looked and felt beautiful during their fashion photography session after having their makeup and nails done; and 2,041 kids have met Batman. This is just a small sample of Hope for Henry's entertaining program that produces smile after smile while distracting kids from painful medical procedures and the tedium of long hospital stays that are a necessary part of their treatment.

My husband Allen Goldberg and I founded Hope for Henry in 2003 on what would have been our son Henry's 8th birthday. During his too-short but magnificent life, Henry taught all of us to live well and laugh hard, even while he fought Fanconi anemia, a deadly blood disease.

Hope for Henry is the only organization in Washington DC whose singular focus is on improving the day-to-day experience of children with cancer and life-threatening blood disease year-round at Children's National Medical Center and MedStar Georgetown University Hospital. Every day, hospitalized kids are smiling and laughing because of Hope for Henry.

While the doctors and medical teams focus on curing physical illnesses, Hope for Henry is an Rx for their spirit, bringing joy, fun, magic and adventure into their lives despite their serious medical needs. Sadly, not everyone benefits from the admirable efforts to find cures � but every one of these courageous kids immediately benefits from Hope for Henry's ability to make them feel special and loved every day. In addition to the benefits of increased levels of hope and happiness, medical experts routinely observe that Hope for Henry's program contributes positively to patient recovery - through increased willingness to accept necessary medical care, decreased feelings of isolation, and reduced expressions of fear surrounding medical procedures.

Henry's legacy goes well beyond the work of the Foundation established in his name. In an effort to save his life, our family was the first in the world to use preimplantation genetic diagnosis (PGD) to try to get pregnant with a baby free of genetic disease and a perfect HLA match to Henry � the ideal stem cell donor - and hopefully his savior. We endured nine failed courses of the procedure between 1996-2000 before running out of time and resorting to a generous anonymous donor identified through the National Marrow Donor Program. Henry's story was featured in a New York Times Magazine cover story and twice on ABC News' Nightline. My book, Saving Henry (Hyperion, 2010) is the story of our family's search for a cure, and the long-lasting scientific impact of Henry's life.

Hope for Henry

Laurie Strongin is the founder and executive director of Hope for Henry Foundation. The Foundation brings smiles, laughter and joy to kids with cancer and other serious illnesses. Laurie Strongin also acts as a family advocate in the national discussion of ethics and genetics. She has participated as a panelist and guest lecturer in forums hosted by the Johns Hopkins Genetics and Public Policy Center. In 2006, Laurie joined Congresswoman Nancy Pelosi to urge Congress to pass the Stem Cell Research Enhancement Act. She lives in Washington DC with her husband Allen Goldberg and sons Jack and Joe.