Huntington Beach, CA — September 13, 2014 — Global Genes – Allies in Rare Disease, held its third annual “Tribute to Champions of Hope” gala Saturday, September 13, at the Hyatt Regency Huntington Beach and featured American Idol Season8 winner Kris Allen. The singer/songwriter performed his platinum-selling single, “Live Like You’re Dying,” “Fighters,” along with a selection, “In Time,” from his newly-released first independent album, “Horizons.”
In addition to Allen’s performance, up-and-coming LA-based singer/songwriter Jessi Malay, who is currently recording her debut album, performed, as well as the hip-hop dance troupe Culture Shock LA. Access Hollywood LIVE co-host Kit Hoover, and Access Hollywood co-host, Liz Hernandez, participated in the gala with Hoover taking on some emcee responsibilities and Hernandez presenting a special award to The Marfan Foundation for its advocacy outreach to the Spanish-speaking community. Other celebrity guests attending included Eileen Grubba (Sons of Anarchy, CSI, The Closer), Carmen Argenziano (House, Young and the Restless and CSI), Cody Longo (Nick at Nite Show, “Hollywood Heights”), and Michael Fishman (D.J. Conner on Roseanne TV Series), whose wife Jennifer has a rare kidney disease.
More than 600 patients, advocacy leaders, biotech, and pharmaceutical executives, healthcare philanthropists and celebrities attended, where the nonprofit’s Founder and CEO Nicole Boice, who has been instrumental in Global Genes becoming a leading rare disease patient advocacy organization since its founding in Aliso Viejo in 2008, gathered a group of pioneering individuals and corporations to be honored who are committed to making a difference in the lives of the millions of patients and their families affected by rare diseases. They included RARE Champions of Hope: Industry Trailblazer: Dr. Moncef Slaoui, Chairman, Global Research & Development and Vaccines, GlaxoSmithKline; Collaborations in Advocacy: Carolyn Levering, President & CEO, The Marfan Foundation; Collaborations in Science: David Altshuler, M.D., Ph.D, Chair, Steering Committee and Peter Goodhand, Executive Director, Global Alliance for Genomics and Health; and Public Service: David Williams, President and CEO, Make-A-Wish® America.
Global Genes Executive Director Andrea Epstein introduced patient advocates Ann Marie Jennison and Keegan Johnson, who spoke about the challenges of raising children with rare diseases and the importance of finding a diagnosis for children with those diseases.
Other notable guests attending included: Wendy White (CEO, Siren Interactive), Juan Bowen, MD (Director of Mayo Clinic’s Marfan Clinic), Ivelisse Estrada (SVP, Corporate and Community Relations, Univision), Katherine Rauen, Ph.D (University of California, Davis, RASopathies), Natalie Douglas (CEO, Healthcare at Home), Samantha Petersen, 17 (Teen Advocacy honoree and Founder, SHIFT Scoliosis), Hawken Miller, 17 (Duchenne muscular dystrophy patient and advocate and Make-A-Wish presenter), Noah Coughlin (Producer, Rare for Rare documentary and extreme athlete, who ran across the country twice for rare disease awareness), and more.
In addition, the third annual two-day Patient Advocacy Summit was held prior to the “Tribute to Champions of Hope” gala to bring together rare disease patients, parents, advocates, clinicians, and key stakeholders for a series of best practices panels and policy driven discussions.
It is estimated that it takes an average of five to seven years for a patient suffering from a rare disease to receive a proper diagnosis, with 95% of those diseases having no FDA approved treatment. This event continues to raise awareness for the more than 7,000 different types of rare diseases that affect roughly 30 million Americans and approximately 350 million people worldwide. The proceeds raised at this year’s “Tribute to Champions of Hope” gala will benefit Global Genes’ educational programs, as well as its innovative Undiagnosed Patient Program, which aims to support direct funding for complex diagnostics, including genome sequencing for patients struggling to find a diagnosis.
Major sponsors of the 2014 “Tribute to Champions of Hope” gala included Title Sponsor, Walgreens, along with Alexion, Retrophin, Sciensus, Pfizer, Shire, Genzyme, BIO, Vanda Pharmaceuticals, BioMarin, Vidara, Novartis, Goldman Sachs, Siren Interactive and Recordati Rare Diseases, among many others.
Guests departed with a jar of seeds in the shape of hearts, as a symbol of the hope and love that will grow to support those in the incredible fight against rare disease.
About Global Genes
Global Genes™ is a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.
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Contact: Christina Fumia