The Crowd: Funds and awareness for rare diseases

The ballroom at the Balboa Bay Club and Resort was filled with some 500 guests from all over the nation.

They had come for the inaugural Champions of Hope Gala benefiting the Global Genes/ RARE Project, a nonprofit advocating research and treatment for roughly 30 million Americans affected by rare and genetic diseases.

The Sept. 27 program in Newport Beach kept 500 people still for three hours. Not a sound came from the audience intent on capturing every word from a line-up of speakers, advocates, doctors, parents, caregivers and patients facing challenges in life brought on by afflictions most folks have never heard of, let alone had to face.

Seven thousand rare diseases are known to man and 95% of them do not have any sort of approved drug treatment, according to statistics presented at the dinner supplied by the National Institutes of Health. The national attendance included many people, mostly young children and adolescents with their parents, who came as a show of solidarity in support of the work of Global Genes/ R.A.R.E. Project led by champion advocate Nicole Boice.

Not only do people suffering from any number of these rare diseases have no Food and Drug Administration approved medicine, only about 10% of them have established organizations to rally advocacy. Among the well known are cystic fibrosis and muscular dystrophy. But how many people know what Shwachman-Diamond syndrome is and how it affects people?

The event was nothing short of inspirational. Emceed by Dawn Marie Kotsonis, organizers honored numerous individuals who have dedicated their lives to finding answers to some of the seemingly overwhelming questions related to such diseases.

Among the distinguished speakers on numerous ailments were Henri Termeer, former chief executive of Genzyme Corp., Dr. Fredrick Wigley, director of Johns Hopkins Scleroderma Center, geneticist Elizabeth Neufeld, deaf-blind advocate Bill Barkeley, Pat Furlong, patient advocate and Parent Project Muscular Dystrophy chief executive, Olympian Adam Nelson and Scott Shirley, executive director of Uplifting Athletes, a nonprofit working with college football players facing rare diseases.

An element of Hollywood entertainment added some cheer to the mostly serious evening. Among the entertainers were Meagan Tandy ("Jane by Design"), Chris Mann and Katrina Parker ("The Voice"), Jason George, ("Grey's Anatomy") and Nestor Serrano ("Act of Valor").

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Sharing the Vision

The health of children was the focal point of another recent important Southern California event.

The second annual Shared Visions Gala unfolded Sept. 20 at the Richard Nixon Presidential Library and Museum in Yorba Linda, attracting a sold-out audience of 350 doctors and advocates of vision care and treatment from all over SoCal, but coastal Orange County in particular.

Sponsored by the Southern California College of Optometry, this signature annual event raised funds to support "the delivery of vision care to Orange County's underserved children," according to press materials associated with the event produced by the 108-year-old college.

Chairing the evening which began with a sunset cocktail reception and silent auction followed by dinner in the "East Room" of the library were honorary O.C. representatives Frances and Steve Knott. Maria Hall-Brown, PBS SoCal anchor served as master of ceremonies. Organizers expect to raise $200,000 net.

Major sponsorship came from Essilor, NVISION Laser Eye Centers, Abbott Medical Optics, Allergan and the Gavin Herbert Eye Institute to name only a few generous donors. Honored guests of the night were Donald Studt, James Mazzo for Abbott Medical, James Blake, Thomas Tooma and Ronald Hopping representing the InfantSEE Program.

Kevin Alexander, SCCO president, shared with the audience the crucial importance of providing eye exams and appropriate treatment for O.C.'s school children.

"The majority of children are not receiving professional eye exams prior to starting school," he said, adding, "Children with untested vision problems will have trouble in school learning reading, writing and arithmetic if they can not see."

THE CROWD runs Thursdays and Saturdays. B.W. Cook is editor of the Bay Window, the official publication of the Balboa Bay Club in Newport Beach.

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