The HeartSongs Project: An International Collaboration to Enhance Communication, Decision-Making and Quality of Life for Children and Families Affected by Pediatric Neuromuscular Diseases

Drs. Gail Geller and Cynda Rushton co-directed the Heartsongs Project, funded by the Stavros Niarchos Foundation. The goal of this two-year project was to develop a worldwide network of professionals, parents and affected children who shared a common vision of comprehensive and integrated care for children with life-threatening neuromuscular diseases. With a focus on communication, decision making, quality of life and ethical challenges, the project brought together experts in pediatric palliative care, pediatric neuromuscular diseases, and parents and affected children. The project developed recommendations regarding best practices in comprehensive and integrated care. The project included an opening summit in England in April 2008, followed by a year of effort by conference participants in smaller working groups. The project culminated in a second summit held in Greece in April 2009. Nearly 70 people from 10 countries served as “ambassadors” of their home countries. “Ambassadorial teams” networked with other colleagues in their respective countries, involving them in the project’s work. The 2009 summit allowed the working groups to report their findings for a comprehensive set of recommendations. This project is in honor of Mattie J.T. Stepanek.

Ethics Working Group

As chair of the Ethics Working Group of the HIV Prevention Trials Network (HPTN), the Institute’s Deputy Director for Medicine Jeremy Sugarman helps to address ethics questions related to HPTN research. The HPTN is a worldwide collaborative involving clinical trials that develop and test the safety and efficacy of non-vaccine interventions to prevent HIV transmission. Representatives from diverse fields, areas of expertise, and geographic regions are included. Learn More

“Healing” For Chronic and Terminal Disease

Medical personnel often discuss the importance of their patients’ emotional “peace” and/or spirituality, particularly when a cure for a disease is non-existent. Through this annual volunteer activity, the Berman Institute’s Dan Finkelstein and other physicians and nurses provide medical care to chronic and terminally ill patients en route from Baltimore to Lourdes, France. The patients are recommended by their Catholic parishes to make the special pilgrimage.

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