Global Genes | R.A.R.E. Project has announced that Faircraft Records/Universal Republic recording artist Chris Mann and singer/songwriter Katrina Parker, both fan favorites and stars of the second season of the NBC hit television show “The Voice,” will perform at the first annual ‘RARE Tribute to Champions of Hope’ benefit on September 27, 2012, at the Balboa Bay Club & Resort in Newport Beach, CA.
Global Genes | R.A.R.E. Project is the leading non-profit organization advocating for the roughly 30 million Americans and approximately 350 million people worldwide who are affected by rare and genetic diseases and disorders. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans per disease. According to the National Institutes of Health (NIH), there are nearly 7,000 such rare diseases and an estimated 95% do not have a single approved drug treatment.
“Music is a universal language that connects us all, has the power to soothe the soul and can play an important part in a patient’s healing process,” said Chris Mann. “I am honored to be able to use my gift of music to help raise awareness for the prevalence of rare and genetic diseases that affect millions of people worldwide.”
“Millions of people suffer from rare diseases that are misrepresented or misunderstood by the world at large,” said Katrina Parker. “These people face unique challenges and achieve unique victories every single day. They are fighters in the truest sense of the word. I am delighted to be part of this benefit to help lead the way for more support, research, empathy and community.”
In addition to musical performances by Chris Mann and Katrina Parker, “Grey’s Anatomy” star Jason George will join actors Nestor Serrano (Act of Valor, The Negotiator, The Insider, Secretariat) and Meagan Tandy (Jane By Design, 90210, CSI: NY, Dark Blue) as celebrity presenters and will introduce some of the evening’s distinguished honorees.
“I became aware of rare diseases when I was starring on a medical drama series and one special episode dealt with childhood cancer,” said Jason George. "I had no idea that all childhood cancers are considered rare diseases and I was floored when a number of families whose lives had been rocked by childhood cancer reached out to me on Facebook to thank me for being part of the episode. I have young children of my own and the “what if it was my child” question landed hard, and ever since I’ve tried to support awareness for rare diseases in any way possible."
Gracie Van Brunt, a young girl battling a rare disease called Shwachman-Diamond Syndrome, will take the stage and perform a special song of hope that she wrote, which chronicles her journey as a rare disease patient. Shwachman-Diamond Syndrome is a rare congenital disorder that attacks the pancreas, making it difficult to digest food. The disease also attacks bone marrow, stunting growth.
In addition to numerous award presentations, a special Lifetime Achievement Award will be presented to Henri Termeer, former President and CEO of Genzyme Corporation.
Sponsors of the “RARE Tribute to Champions of Hope” Gala and Rare and Genetic Disease Patient Advocacy Day include: Amicus, Amylin, Alexion, Bayer, BIO, BioMarin, Burrill & Company, Centric Health Resources, EveryLife Foundation, Feinstein Keen Healthcare, Genzyme, Goldman Sachs, Hollencrest Capital, Illumina, Oprhan Europe, PatientsLikeMe, Pfizer, Shire, Sigma Tau, Synageva, Vertex, and Walgreens.
Tickets to the event are available here.
