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Annual Charity Golf Tournament in Merritt Island Raises $33K to Find a Cure for Sturge-Weber Syndrome

Posted by Mitch Ribak on Sunday, July 19th, 2015 at 8:47am.

Annual Charity Golf Tournament in Merritt IslandThe numbers are out and the annual charity golf tournament sponsored by Tropical Realty raised $33,000 dollars to find a cure for Sturge-Weber syndrome. The golf tournament is the largest annual event Tropical Realty sponsors to raise money for Sturge-Weber syndrome research and awareness. Smaller fundraisers with Uno’s Pizzeria and Grill in Viera are also held throughout the year. 

The golf tournament sold out for the 5th year in a row and surpassed last year’s charitable donation by over $5,000 dollars. Over 140 participants were in attendance and each enjoyed great prizes and a beautiful day on the greens. The winner went home with a foursome to Champion’s Gate Golf Club in Orlando, an award-winning course boasting 2 signature Greg Norman designs surrounded by gorgeous natural Florida habitat.

The tournament featured a helicopter golf ball drop, which also sold out. Over 3,000 golf balls were dropped on the green. Participants hoped Lady Luck would steer their golf balls in the right direction, because the one that landed closest to the hole won $500 dollars. The second place ball won $250 dollars.

Planning for next year’s golf tournament will begin early in 2016. The event promises to be a great day out on the course supporting critical research. Planners are excited to come up with new and exciting features to add to the already highly anticipated tournament that raises money to find a cure for Sturge-Weber syndrome.

Sturge-Weber syndrome is a gene mutation that occurs prior to birth and affects 1 in 20,000 children born every year. One of 7,000 orphan diseases worldwide, Sturge-Weber syndrome causes a number of symptoms, including port-wine birthmarks, glaucoma, seizures and intellectual impairment.

Every dollar raised at the annual goal tournament is vital to finding better treatments and a cure for this rare disorder. Smaller charities for lesser-known diseases, like Sturge-Weber syndrome, are critical in the fight against them and the effort to provide better quality of life for those affected.

In 2013, a major breakthrough was announced that could lead to an eventual ease of Sturge-Weber syndrome symptoms through drug intervention. Researchers identified a gene mutation that occurs before birth as the cause of the neurological and skin disorder. The mutation causes signaling pathways within cells to be overactive. Treatment options are limited, but research breakthroughs create hope for an eventual cure. 

Director of the Kennedy Krieger Institute’s Nelson Sturge-Weber Center, Anne Comi, M.D., commented on the breakthrough, “This is a complete game changer for those with Sturge-Weber syndrome and the millions born with port-wine birthmarks.” She went on to say,” Now that we know the underlying genetic mutation responsible for both conditions, we’re hopeful that we can move quickly towards targeted therapies, offering families the promise of new treatments for the first time.”

The identification of the rare disorder’s cause allows researchers to devote their time to investigating drug options that can counteract its affects. The annual charity golf tournament held in Merritt Island provides vital funding to keep this critical research going so that a cure for Sturge-Weber syndrome can become a reality and improve the lives of children affected by the disease.

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