Grand Rounds January 2010 · 13 January 2010
Hailey’s Wish was proud to sponsor Dr. Fernando Scaglia to give a lecture on Mitochondrial disease to a large group of physicians and staff at Children’s Hospital of Orange County, Orange, Ca.
January 13th 2010 –
Mitochondrial Diseases in Children: An Update
Fernando Scaglia, MD, FACMG Associate Professor of Genetics, Dept. of Molecular & Human Genetics Baylor College of Medicine and Texas Children’s Hospital.
Objectives: At the conclusion of this presentation, participants will be able to:
1. Recognize clinical presentations of mitochondrial disorders.
2. Refer patients and their families for further testing and management.
Haileys Wish is Awarded Google Grant · 2 July 2008
Google has awarded HaileysWish.org the prestigious Google Adwords Grant to assist in the mission of Hailey’s Wish.
With Google’s assistance HaileysWish.org is helping to improve research and education for mitochondrial diseases.
Dr. Jose Abdenur gives Hailey's Wish board members a tour of his CHOC Laboratory · 1 April 2008
We were invited by Dr. Jose Abdenur to tour the Metabolic Department Laboratory at Children’s Hospital of Orange County in Orange on April 1, 2008. Dr. Abdenur is the Medical Director of Metabolic Services at CHOC and the PSF Chief of the Metabolic Disorders Division.
Currently the Metabolic laboratory has the capability to run a limited number of tests to assist in getting rapid results for patients at CHOC. The time it takes to coordinate and then ship a lab sample for testing can delay a test result by weeks. Aquiring better testing equipment for the CHOC laboratory is only one of many ways your support will help!
And to our surprise, hanging on the wall, in the hallway of the laboratory was a large abstract of a clinical evaluation of Hailey’s medical journey. It turns out that Dr. Abdenur presented Hailey’s story at a conference to hundreds of medical professionals. His ability to share with this audience the facts of Hailey’s case and how her medical symptoms and lab work did not correlate to what he knew to be true about Mitochondrial Disease is just outstanding. It shows the medical community that mitochondrial diseases have many varying symptoms for the same disease so it is important to keep an open mind and realize there can always be exceptions to the rule.