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Joining me at the Global Genes RARE Project's Second Annual Tribute to Champions of Hope gala was its founder/president Nicole Boice

Joining me at Global Genes RARE Project’s Second Annual “Tribute to Champions of Hope Gala” was its Founder/President Nicole Boice

I love Nicole Boice. She has one of the most caring hearts of anyone I’ve ever known. Nicole had a friend who tried for 2 1/2 years to find out what was wrong with her 2 1/2-year-old son. When the parents finally received a diagnosis, they found the rare disease was not curable and not treatable. They were devastated. Nicole was too and decided to do something about it. The Laguna Niguel resident quit her corporate job (she had worked in the corporate world in major positions for 25 years) and founded Global Genes RARE Project in 2008. Today, the nonprofit is recognized worldwide as a leading rare and genetic disease patient advocacy organization.

Last year Nicole launched the Global Genes “Tribute to Champions of Hope Gala” to honor people in the rare disease community who are making remarkable strides in helping rare disease patients and their families.The second annual gala sold out two months early and drew more than 500 rare disease patients, caregivers, family members and friends, advocacy leaders, biotech and pharmaceutical executives, and healthcare philanthropists to the Balboa Bay Resort in Newport Beach.

To say it was a heartwarming affair was an understatement. I daresay there wasn’t one person attending who didn’t get teary-eyed at some point in the evening. There were the two six-year-old boys, the best of friends, with a wonderful story to tell. Dylan Seigel wrote a book called, Chocolate Bar Book, to raise money for a treatment and cure for his buddy, Jonah Pournazarian, who is suffering from a rare liver condition. Book sales had reached $400,000 at the gala. There was award-winning fashion photographer Rick Guidotti, turned do-gooder, who photographs children showing the beauty of their genetic differences. His spell-binding photos were enlarged and showcased throughout the cocktail reception.

Twenty-eight-year-old Josh Sommer’s story took your breath away. Diagnosed with chordoma, a rare cancer of the skull and spine, his freshman year at Duke University, he immediately went to work in the top chordoma research lab in the country and established the Chordoma Foundation. His efforts have proved amazing, and Forbes has listed him as one of their 30-under-30 year-olds to watch! RARE Champion Award as Medical Care Giver was presented to John C. Carey, MD, Department of Pediatrics Professor and Co-­Chair at University of Utah Health Sciences Center and School of Medicine, also inspired as he shared his passion for the care of children with birth defect syndromes.

Dr. Stephen Groft, Director of the National Institutes of Health’s Office of Rare Diseases Research, received the Henri Termeer Lifetime Achievement Award, which was presented to him by Henri Termeer, considered to be the “godfather of biotech.” “Momentum around our cause is enormous,” Termeer said, “and we owe Stephen Groft that honor.”

Emmy-nominated recording artist Andrew McMahon, a singer/songwriter best known for  his work with the band Jack’s Mannequin, entertained and shared his struggles with his diagnosis of acute lymphocytic leukemia (ALL) in 2005. He established the Dear Jack Foundation to advocate and support initiatives that directly benefit adolescents and young adults diagnosed with cancers. “I didn’t have a rare disease, but I’m here tonight for those who are trying to find answers,” he said. The all-girl sister band Cimorelli, popularized on YouTube and signed to the Universal Music Island label, also entertained, with the youngest sister Amy sharing publicly for the first time her bout with the rare disease Turner Syndrome, which has stunted her growth.

Celebrity guests included Eileen Grubba (Sons of Anarchy, CSI, The Closer) and Carmen Argenziano (House, Young and the Restless, CSI), who were both award presenters. Parent advocates Cristy Spooner and Caroline Loewy shared what life was like living with children with rare diseases, which prompted generous giving and ultimately helped reap net proceeds of $370,000 to further the nonprofit’s efforts to fund tools and resources to support the global rare and genetic disease community and to support its partners in the areas of diagnosis and research.

Photos: Carla Rhea and Bob Hodson

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