Baby Charlie Gard: Join Statement FMM, UMDF, MitoAction
On July 7, the Foundation for Mitochondrial Medicine, the United Mitochondrial Disease Foundation and MitoAction sent a joint letter to editors of top US daily newspapers in the 10 largest media markets and also to USA Today, The NY Times and the Wall Street Journal regarding the need for further research and awareness for mitochondrial disease created by the UK’s Charlie Gard case. Our sincerest wishes are with the Gard family and it is our joint hope that the conversation and support for mitochondrial disease will continue as more people understand the complexity of the disease.
The plight of UK baby Charlie Gard has brought visibility of mitochondrial disease to the world. While many are unfamiliar with the disease, no one can live without mitochondria—tiny cellular powerhouses, essential for energy creation in organ systems, like brain, heart and muscles. Charlie’s genetic mutation of mitochondrial depletion may be rare, but mitochondrial disease is not – approximately 1 in 2,500-5,000, adults, teens and children are affected, making mitochondrial disease more common than childhood cancers.
l dysfunction is proven to be at the root of many common diseases and conditions that affect young and old, from Autism to Parkinson’s, Alzheimer’s, some cancers, and it may even be responsible for aging itself. Almost everything related to human health can be traced back to the mitochondria. Research centered on the mitochondria has the potential to be the Holy Grail of medicine.
The recent events surrounding baby Charlie Gard intensify and justify the need for increased awareness and support of treatment-oriented research for the many aspects of mitochondrial disease. Due to the variable course of mitochondrial
dysfunction and the fact that no two patients experience the same symptoms, treatments remain frustratingly basic, consisting mostly of supportive care that focuses on symptom management and the prevention of complications.
With mitochondrial dysfunction contributing to so many disparate diseases, collaboration across specialties, among clinicians, researchers and pharmaceutical companies, is vital. Non-profit organizations, such as ours, are forming partnerships to maximize our work. Treatments cannot come quickly enough to help Charlie and the many other adults and children across the globe struggling every day with mitochondrial disease. To learn more about mitochondrial dysfunction and disease, and the state of research and treatment, please visit: www.mitochondrialdiseases.org, www.mitoaction.org, www.umdf.org.
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July 24, 2017
The thoughts and prayers of the entire mitochondrial disease community are with Charlie Gard and his mother and father, Chris Gard and Connie Yates. They have decided to withdraw their request to have little Charlie treated with an experimental therapy. Medical experts have told the family it would not be effective for him. This is a heartbreaking situation that no parent should ever have to face. The path the Gard family has had to follow has been complicated and very difficult.
There are more than 200 different forms of mitochondrial disease ranging from mild to severe. The disease is difficult to diagnose because it affects each patient differently. No two patients are alike in their symptoms or care management..
Charlie’s path is not an uncommon path for those who battle mitochondrial disease and justifies the need for more awareness, and government and private support of faster diagnostic tools, potential treatments and ultimately a cure.
Mitochondrial Medicine Society:
The London Times: