Boston, MA (PRWEB) March 21, 2014
In an ongoing effort to improve mitochondrial disease patient care, MitoAction will host the 2014 Mitochondrial Disease Clinical Conference Boston on May 3, 2014 at Mandarin Oriental. This is MitoAction’s third Clinical Conference, and second in Boston, for this audience of community healthcare professionals.
The conference will offer physicians, nurses, and specialists -- who are not mitochondrial experts -- an opportunity to understand more about identifying mitochondrial diseases, managing adults and children with mitochondrial disorders, and assisting patients with treatment options and coordinated care. Expert faculty will provide the most clinically relevant information with the intention of helping to educate healthcare providers about specific strategies for helping the mitochondrial disease patient. The conference has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of Tufts University School of Medicine (TUSM) and MitoAction. CME for physicians and contact hours for nurses will be offered.
"The Mitochondrial Disease Clinical Conference in Boston this spring is a direct response to requests from our community of patients and parents, and the healthcare providers who care for them,” said Cristy Balcells, RN MSN, Executive Director of MitoAction. “We recognize an urgent need to educate those nurses and physicians who are on the frontlines caring for children and adults who present with an array of confusing and complex symptoms inherent to mitochondrial disorders. This is not a research meeting -- this is a one-day crash course in how to manage these patients by some of the most well-respected mitochondrial specialists in the country."
Guy Miller, MD, PhD, CEO of Edison Pharmaceuticals, will give the Keynote Address, “Advancing the Frontier of Mitochondrial Medicines -- Development of Drugs Targeting Nature’s Powerhouse.” Edison recently secured a $4.3 billion strategic partnership with Dainippon Sumitomo Pharma Co., Ltd. of Japan to further develop the drug pipeline for mitochondrial disorders, including EPI-743, which is now in clinical trials. Miller will discuss how the mitochondria are implicated in many diseases, clinical treatment perspectives, how new drugs are discovered, and the evolving vision for the field of mitochondrial medicine.
Mitochondrial disease -- known as “Mito” -- is a genetic, chronic illness that causes debilitating physical, developmental, and mental disabilities. You can be born with it or it can develop later in life. It’s progressive and there is no cure. About 1 in 2,000 people has Mito. Symptoms may include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Mito is also related to autism, diabetes, Alzheimer’s, Parkinson’s, and many other more common diseases.
“Most clinicians have little knowledge on mitochondrial medicine and may think that these disorders are rare, but they probably have several patients with mitochondrial disease,” said Children’s Hospital Los Angeles Medical Geneticist Richard Boles, MD, a conference presenter and Medical Director for Courtagen Life Sciences, Inc. “Identifying and appropriately managing these patients is very important.”
Course directors and speakers include Mark Korson, MD, Tufts Floating Hospital, Boston; Amy Goldstein, MD, Children’s Hospital, Pittsburgh; Fran Kendall, MD, VMP Genetics, Atlanta; Richard Boles, MD, Children’s Hospital, LA; Amel Karaa, MD, Massachusetts General Hospital, Boston; and Andrew Nierenberg, MD, Massachusetts General Hospital.
The one-day clinical conference will be followed by MitoAction's 5th annual Derby Day Benefit for Mito, a Kentucky Derby- themed cocktail reception and fundraiser at Mandarin Oriental, Boston that benefits MitoAction's patient support and summer camp programs. To top off the weekend, families and friends from the Greater Boston area will gather on Sunday, May 4 for a special screening of "The Magic Bracelet,” a film written by the late Rina Goldberg, who lost her battle with mitochondrial disease at the age of 15 in 2010.
To register or for more information, please visit http://www.mitoaction.org/clinicalconference or email conference(at)mitoaction(dot)org.
MitoAction is a 501(c)(3) charity formally incorporated in 2005 to provide programs and resources centered on support, education, and advocacy for patients and families affected by mitochondrial disease. For more information, visit http://www.mitoaction.org.