Global Genes™, a leading global rare disease patient advocacy organization, hosted the fourth annual RARE Tribute to Champions of Hope on Saturday, September 26, at the Hyatt Regency Resort & Spa in Huntington Beach. More than 800 patients, advocacy leaders, biotech, and pharmaceutical executives, healthcare philanthropists, star athletes, pop stars and celebrities came together to support the fight against rare disease. The evening of heartfelt awards, presentations and performances raised funds to directly benefit Global Genes’ educational programs, as well as the organization’s new Patient Impact Grant program.
The star-studded evening kicked off with a pre-event cocktail reception sponsored by Healthcare at Home. Celebrity award presenters and guests in attendance included Bryce Dallas Howard (Jurassic World), Jason Ritter (Gravity Falls, Girls), Lindsey Shaw (Pretty Little Liars), Kit Hoover (Access Hollywood LIVE), Max Charles (The Amazing Spider-Man 2, American Sniper), Melanie Lynsky (Two and A Half Men), Madison Mclaughlin (Supernatural), Camryn Howard (Straight Outa Compton) Travis Flores (philanthropist, author and actor), and Lisa Bentley (11x Ironman champion and Pan Am Games winner). Rare disease patient advocate and syndicated radio talk show host, Scot “Froggy” Langley, played the master of ceremony for the evening of festivities.
As the gala began, CEO of Global Genes, Nicole Boice welcomed guests with a champagne toast noting, “We are so honored tonight to be in a room filled with so much hope and courage. On behalf of Global Genes we extend our deepest thanks to everyone here for their unwavering dedication to the rare disease community.“
Tribute to Champions of Hope alumni performer and 2013 Teen Choice Award Web Star Winner, Cimoreli, delivered the first performance of the evening. American Idol season 8 winner and Platinum Recording artist, Kris Allen, took the stage for a special collaborative performance with RARE Champion of Hope, 12-year old Global Patient Ambassador honoree, Ben Lou. Later in the program breakout-recording artist, Aleem, performed. 2015 Macy’s iHeart Radio Rising Star Contest, Christina Grimmie, took the stage and delivered the final songs of the evening with a moving a capella performance.
Seven standout honors were presented during the night and included RARE Champions of Hope: Teen Advocacy: Shira Strongin, patient advocate, Ehlers Danlos Syndrome and founder of The Sick Chick Network; Global Patient Ambassador: Ben Lou, patient advocate, Spinal Muscular Atrophy (SMA); Awareness: Andrew Lenchewski – Executive Producer, Michael Rauch – Producer, Writer, Director & Mark Feuerstein, Actor (Royal Pains); Brave Feats of Courage: Noah Coughlan, 3x transcontinental racer and patient advocate, Courtnay Midkiff, transcontinental walker, patient advocate, Jonathan Maidment, Appalachian trail hiker, patient advocate, and Bonner Paddock, Kona Ironman competitor, marathoner, author, patient advocate; Patient Impact Grant Program: Caroline Harding, CEO Genetic Disorders UK and Natalie Douglas, CEO Healthcare at Home; Documentary: Marianna Palka, writer and producer and Lucy Walker, director, The Lion’s Mouth Opens; and Industry: Alexey Salamakha, manager of patient advocacy and Nicole Riley, director of public relations, Novartis Pharmaceuticals Corporation.
The 4th annual two-day RARE Patient Advocacy Summit took place September 24-25, prior to the gala, and brought together rare disease patients, parents, advocates, clinicians, and key stakeholders for a series of best practices panels, policy driven discussions and recognitions. Between the two events, Global Genes raised over $1.2 million with proceeds going directly to fund Global Genes Educational programs and recently announced Patient Impact Grant Program.
It is estimated that it takes over 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. Global Genes’ RARE Patient Advocacy Summit and Tribute to Champions of Hope Gala annually raise awareness for more than 7,000 different types of rare diseases that affect roughly 30 million Americans and approximately 350 million people worldwide.
Sponsors of the 2015 RARE Tribute to Champions of Hope Gala and RARE Patient Advocacy Summit include the following organizations:
Alexion, Amicus, Healthcare at Home, Horizon Pharma, Takeda, Walgreens, and Genzyme.
Other Sponsors include:
Aegerion Pharmaceuticals, Abeona Therapeutics, Alnylam Pharmaceuticals, Ambry Genetics, Audentes, BIO, BioMarin, Biogen Idec, Boehringer Ingelheim, Cambridge BioMarketing, Clementia, Connexion, Counsyl, Dohmen Life Science Services, Every Life Foundation for Rare Diseases, Genentech, GSK, Illumina, Insmed, Intellia, Intercept, Idis, Invitae, Janssen, Jazz Pharmaceuticals, New Enterprise Associates, Novartis Oncology, Pfizer, Recordati Rare Diseases, Retrophin, Raptor Pharmaceuticals, Sarepta, SERMO, Shire, Sigma-Tau Pharmaceuticals, SmithSolve, Synlogic, Synageva, Ultragenyx, Vanda, Vertex and Watson Land.
About Global Genes – Allies in Rare Disease
Global Genes is a leading global 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 and support 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.