Mitochondrial Disease Leadership Creed for Physicians, Researchers, Patient Advocates and Organization Representatives
We believe that mitochondrial disease is a very real and potentially devastating diagnosis. We believe that adults, children and families who suffer from this disease deserve support. We believe in transparency of diagnosis and treatment and collaboration in the clinical decision making process. We insist on direct and thoughtful communication between all healthcare providers involved in the mitochondrial disease patient’s care and believe that parents should not be burdened with the role of medical liaison. We recognize that such open communication between all providers enhances a patient’s medical care and can help to prevent unfortunate allegations of misconduct which can be destructive for the patient and family and their relationships with the medical community. We support international research efforts to improve the standards of diagnosis, treatment and basic understanding of the disease.
We encourage open discussion about the challenges facing the patients as well as the physician community who care for those with mitochondrial disease. We wrestle with the difficulties that these patients and families face and pledge to do our best to address them in a manner which is direct, honest and helpful. We honor the patients and families suffering as pioneers alongside us in this new and rapidly growing arena.
We recognize that mitochondrial disease is a complex diagnosis and that patients and families are often under duress during their diagnostic odyssey. We too are frustrated by the lack of treatment options available for our patients. We believe that awareness and education on multiple levels are critical. We strive to improve communication between physicians and healthcare providers about mitochondrial disease in an effort to improve our patient’s lives. We envision a future in which children and adults with mitochondrial disease will be better understood and will have viable, life-saving treatment options within their reach.
December 15, 2013
Cristy Balcells RN MSN, Executive Director of MitoAction.org
Philip Borden, MitoAction President
Richard Boles MD, Children’s Hospital Los Angeles
Mark Korson MD, Tufts Floating Hospital for Children
Fran Kendall MD, VMP Genetics
Amy Goldstein MD, Children’s Hospital of Pittsburgh
Marie Wise, Fly Me to A Cure
Sumit Parikh MD, Cleveland Clinic
Kathie Sims MD, Massachusetts General Hospital
Arthur Margolis, America’s Compounding Center
Amel Karaa MD, Massachusetts General Hospital
Chuck Mohan, CEO United Mitochondrial Disease Foundation
Maggie Orr, FNP-BC, MSN, MitoAction
Saad Dinno, Rph/FIACP, Acton Pharmacy
Guy Miller MD,PhD Chairman & CEO Edison Pharmaceuticals
Theresa Couture RN BSN, MitoAction Chairperson Emeritus
Richard Frye MD PhD, Arkansas Children’s Hospital Research Institute
Blaine Penny, President, MitoCanada Foundation, Board of Directors
Vicky Spadoni, Executive Director MitoCanada Foundation
Annette Feigenbaum, MD, UCSD
Sean Murray, CEO Australian Mitochondrial Disease Foundation
Dr. Natasha Shur: Albany Medical Center, Albany, NY
Dr. Darius Adams: Atlantic Health System, Morristown, NJ
Gregory Enns, MD, Director, Biochemical Genetics Program, Stanford University
Russell P. Saneto, DO, PhD; Seattle Children’s Hospital/University of Washington
Please join us in submitting your support of this leadership creed – send us your support affirmation to director@mitoaction.org