Family Lodge Dedicated with Major Gift by Safra Foundation
By Dianne Needham
Personal stories can have a positive public result, as is demonstrated in the case of the family lodge planned for NIH.
A ceremony marking the naming of the facility was held Apr. 17 at the Russell Senate Office Building in Washington, D.C. The Foundation for the NIH formally accepted a $3 million donation from the Edmond J. Safra Philanthropic Foundation and announced the dedication of the Edmond J. Safra Family Lodge at NIH.
It was a personal story that caught the eye of Lily Safra, wife of the late Edmond Safra, who passed away in 1999. In the FNIH annual report she read the account of a patient with metastatic kidney cancer whose local doctor had told him nothing more could be done, but that NIH was conducting a clinical study that might help. The patient would undergo an experimental bone marrow transplant at the Clinical Center, which obliged him and his wife to remain nearby for several months.
When that story drew Mrs. Safra's attention, she stepped forward with a contribution to the foundation's Family Lodge Campaign. Her husband had suffered from Parkinson's disease so she knew firsthand about the challenges of being a daily caregiver. Unlike many families dealing with illness, however, she possessed the financial resources to ease the burden. It was her empathy for patients and their families in their most dire moments that inspired Mrs. Safra's gift.
At a mid-day ceremony in the Senate caucus room, she said the lodge reflects "the spirit and values" of her late husband. "When my husband became ill, my world narrowed quickly. Helping Edmond was not my most important goal; it was my only goal," she said.
The lodge is planned as a temporary residence for caregivers of patients taking part in clinical trials. CC director Dr. John Gallin told the audience that patients come from every state in the union, traveling great distances because of the hope that NIH provides hope that "our research will save their lives, or improve the lives of family members, or the lives of others who have their disease." He noted that patients frequently spend months in the Clinical Center and that it becomes their home away from home. Despite special amenities such as recreation rooms, a gym and a school, he said there was more that could be done.
Gallin expressed concern about two things in particular. "The stress of chronic and severe illness is enormous, especially when far away from home, and too many families fracture. What is missing is a convenient place near the hospital to take a break and get a moment of solitude, or take a nap, or get a good night's sleep," he said. "And following intensive therapy patients and family members need a facility where they can transition to home. They need a place where they can gain confidence in home-care procedures in order to gain independence from the hospital."
Offering thanks to Lily Safra and the Safra Foundation, as well as to partners in industry, for their generous gifts, Gallin said the lodge would be a much-needed refuge to welcome and comfort caregivers. He predicts the facility will become an important model for other clinical research centers.
NBC's morning news co-anchor Barbara Harrison moderated the event. The program also included FNIH board chairman Dr. Charles Sanders, actor and patient advocate Michael J. Fox (who also suffers from Parkinson's disease), Ohio Congressman Ralph Regula, Massachusetts Sen. Ted Kennedy, and Dr. Patricia Grady, director, National Institute of Nursing Research.
"This is what the American people are all about, helping people help others. As people committed to giving, Lily we thank you," said Sanders. Regula noted, "Mrs. Safra, the Edmond J. Safra Family Lodge will stand as a monument for years. Those who will never know you will realize that your gift says there are those who care."
"I want to thank Lily Safra for the work she does," added Fox. "Her gift here represents the high standard she brings to everything she does."
Both Kennedy and Grady agreed with Gallin that the lodge might become a model for others to follow. "Patients get better more quickly when they have a family member nearby and their treatment is more effective," said Kennedy, adding that he hoped news of the Safra Family Lodge would soon "echo forth, causing it to be replicated throughout the country and world."
"Patients are often discharged from a hospital without knowing how to cope with their conditions," Grady observed. "Their caregivers are challenged, too. Caregivers need special knowledge to deal with many challenging issues and attend to their own health as well. An NIH program to address these issues for Safra Family Lodge residents would provide lasting benefits as they return home and pick up their caregiving responsibilities again. The program could become a model for other research and care organizations to follow."
Residents will find amenities that reflect the comforts of home as well as the support and companionship of others facing similar challenges. Groundbreaking for the lodge will occur this summer with completion projected for 2003.
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