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Study to explore ethical challenges health professionals face while caring for children with LTNMDs
Date:1/7/2009

(Baltimore) The Greenwall Foundation recently awarded two core faculty members of the Johns Hopkins Berman Institute of Bioethics a grant that will allow Drs. Gail Geller and Cynda Hylton Rushton to explore the ethical challenges health professionals face while caring for children and families affected by life-threatening neuromuscular diseases (LTNMD).

The concept for this latest LTNMD study grew out of the work of the international HeartSongs Project funded by the Stavros Niarchos Foundation. The goal of the HeartSongs Project is to develop a worldwide network of professionals from a range of disciplines, parents and affected children who share a common vision of comprehensive care for children with LTNMD. In addition to the United States, countries involved in the HeartSongs project include the United Kingdom, Canada, Australia, France, Denmark and Greece. The Project aims to integrate the principles of pediatric palliative care (PPC) into the care of individuals living with LTNMDs. PPC can be described as a holistic, interdisciplinary model of care that incorporates emotional, spiritual, developmental, and physical dimensions. The HeartSongs' International Consortium will develop recommendations regarding promising practices in comprehensive and integrated care. The two-year project, co-directed by Geller and Rushton, opened with a summit in England this past April and will culminate in a second summit to be held in Greece in March 2009. Hopes for a HeartSongs II call for expanding the project to include more European countries as well as countries in South America, Africa, Asia and the Middle East.

The HeartSongs Project is named in honor of the young American poet Mattie J.T. Stepanek who lived with a rare form of muscular dystrophy. Mattie's messages of love, hope and peace have stirred the hearts and souls of millions worldwide. The author of 7 books, Mattie shared hope through his 'Heartsongs' poetry, and collaborated with For
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Contact: Ralph Loglisci
RalphL@jhu.edu
410-294-9071
Johns Hopkins Berman Institute of Bioethics
Source:Eurekalert

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