Alexion, Andrea Epstein, Ann Marie Jennison, Bill Gates, BIO, BioMarin, Carmen Argenziano, Carolyn Levering, Chester B. Whitley, Cody Longo, Culture Shock LA, Danielle Staffieri, David Altshuler, David Williams, Dr. Moncef Slaoul, Duchenne musular dystrophy, Eileen Grubba, Genome Magazine, Genzyme, GlaxoSmithKline, Global Alliance for Genomics and Health, Global Genes, Global Research & Development and Vaccines, Goldman Sachs, Hawken Miller, Ilan Ganot, Ivelisse Estrada, Jeanette McCarthy, Jessie Malay, Jill Levy-Fisch, Juan Bowen, Katherine Rauen, Keegan Johnson, Kit Hoover, Kris Allen, Liz Hernandez, Make-A-Wish Foundation, Mayo Clinic, Michael Fishman, Natalie Douglas, National Institutes of Health's Offices of Rare Diseases Research, Nicole Adrian, Nicole Boice, Novartis, Peter Goodhand, Pfizer, rare diseases, Recordati Rare Diseases, Retrophin, Samantha Petersen, Save Babies through Screening Foundation, Sciensus, Shire, Siren Interactive, Stephen Groft, The Marfan Foundation, Tribute to Champions of Hope Gala, University of Minnesota, Univision, Vanda Pharmaceuticals, Vidara, Walgreens, Wendy White, With Fresh Eyes
I must admit, I was pleasantly surprised to meet Access Hollywood LIVE’s Kit Hoover and Access Hollywood’s Liz Hernandez. They were an integral part of Global Genes’ Third Annual “Tribute to Champions of Hope” Gala, which drew more than 600 guests to the Hyatt Regency Huntington Beach Resort & Spa. They were both so friendly, just like talking to your new best friends! And, they knew about the nonprofit’s mission of eliminating the challenges of rare disease and showed a really caring spirit in that regard. It was impressive!
I’ve covered this charity fundraiser for three years now, and I can’t think of another benefit that touches the heart like this one. Aliso Viejo-based Global Genes – Allies in Rare Disease, was founded in 2008 by Nicole Boice, who, after seeing her friends suffer for 2.5 years trying to find a diagnosis for their young son – only to find it was a rare disease that had no treatment or cure – she dropped out of the corporate world to create the nonprofit with the goal of helping families affected by rare disease connect with tools, resources and support. Today, Global Genes is a leading rare disease patient advocacy organization, which 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 more than 350 million people worldwide.
It is a daunting task, and Nicole never ceases to amaze me with her energy and compassion for the mission. She and her team gather patients, advocacy leaders, biotech and pharmaceutical executives, healthcare philanthropists, and celebrities every year to raise money for the cause and to get the message out to more and more people.
The gala honored a group of pioneering individuals and corporations committed to making a difference in the lives of millions of patients and their families affected by rare diseases, and it was an impressive group. Dubbed “Champions of Hope,” the honorees included Industry Trailblazer, Dr. Moncef Slaoui, Chairman of Global Research & Development and Vaccines at GlaxoSmithKline. The award presenters were impressive as well. They were Ilan Ganot, investor, biotech entrepreneur and patient advocate, and Natalie Douglas, CEO of Healthcare at Home and Global Genes board member.
The Collaborations in Advocacy award was presented to The Marfan Foundation, with President/CEO Carolyn Levering accepting, along with Univision’s Sr. VP of Corporate and Community Relations Ivelisse Estrada and Mayo Clinic’s Marfan Clinic Director and MD Juan Bowen. The recipients participated in a unique collaboration in advocacy to Spanish-speaking communities, with Access Hollywood’s Liz Hernandez presenting the honors. Receiving the Collaborations in Science award were M.D., Ph.D and Steering Committee Chair David Altshuler and Executive Director Peter Goodhand from Global Alliance for Genomics and Health. Jeanette McCarthy, Ph.D and Editor-in-Chief of Genome Magazine made the presentation.
The Public Service honoree was Make-A-Wish America, with President/CEO David Williams accepting. Making the presentation was a remarkable young man named Hawken Miller, who suffers from Duchenne muscular dystrophy. The 17-year-old shared how his Make-A-Wish moment with Bill Gates when he was nine years old changed his life (see photo). “I learned from Bill Gates that it is OK to be different and that the main thing in life is to focus on your goals,” he said.
Awards presented the afternoon of the gala were sponsored by Walgreens, with two of the honorees recognized at the gala. Jill Levy-Fisch, President of Save Babies through Screening Foundation, was presented an Advocacy Award, and Chester B. Whitley, M.D. and Ph.D received the Medical Caregiver & Treatment Award for his work at the University of Minnesota’s Departments of Pediatrics and Experimental and Clinical Pharmacology. Presenting was Siren Interactive’s CEO Wendy White, also a Global Genes board member. A video was shown of Stephen Groft, Ph.D, recently retired director of the National Institutes of Health’s Office of Rare Diseases Research and last year’s gala Lifetime Achievement Award recipient, presenting an award in Science to Katherine Rauen, Ph.D, University of California Davis, for her work with RASopathies, and to Teen Advocacy award winner Samantha Petersen, founder of SHIFT Scoliosis.
Global Genes’ Executive Director Andrea Epstein introduced two parent advocates, Ann Marie Jennison and Keegan Johnson, who each spoke about living with children with rare diseases. Jennison especially touched hearts as she brought her two darling children, Charlie and Jane, onstage. Both children have the rare disease NGLY1.
The gala entertainment was impressive. Platinum recording artist and American Idol Season 8 winner Kris Allen rocked the house with his platinum-selling single “Live Like You’re Dying,” and “In Time” from his newly released first independent album, while up-and-coming LA-based singing/songwriter Jessie Malay proved her vocal chops and hip hop dance troupe Culture Shock LA brought energy and fun to their performance.
Besides Hernandez and Hoover, who shared a poignant story about her husband’s best friend dying at age 32 of cystic fibrosis, other celebrities included Eileen Grubba (Sons of Anarchy, CSI, The Closer), Carmen Argenziano (House and CSI), Cody Longo (Nick at Nite Show “Hollywood Heights”), and Michael Fishman (D.J. Connor on Roseanne TV Series), whose wife Jennifer has a rare kidney disease.
Boice gave a loving tribute to her late friend Nicole Adrian, who she said was an inspiration in her fight against an aggressive form of breast cancer and was a warrior for rare diseases through efforts with her son’s disorder called Krabbe disease. “Her spirit will live on, giving people the strength to stay in the fight,” Boice said.
I have to tell you, the ballroom decor was a knock-out with bluebell flower table linens interspersed with wooden farm house tables, along with living flowers and plants, pieces of driftwood and oodles of candlelight in decorative pottery. I loved the tiny plants encased in teardrop glass ornaments suspended from above. Danielle Staffari’s company, With Fresh Eyes, was responsible for the transformation.
The more than $500,000 in net proceeds raised at this year’s gala will benefit Global Genes’ educational programs, as well as its innovative Undiagnosed Patient Program. 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.