Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections. Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life.” The estimated incidence rate is 1 out of 15,700 people. Despite the coincidence and comfort of having a co-worker with a child also diagnosed with Dravet, Amanda describes an uncertain future for their families. “This syndrome is rare enough that pharmaceutical companies aren’t inclined to invest much in research.” There are governmental funding sources aidingmedical research, but not enough to deliver meaningful treatments to patients and families currently dealing with this profoundly disruptive disease. A SALTY SOLUTION Seeing the need for accelerating our understanding of Dravet Syndrome through fundraising and awareness, the Prathers naturally landed on a familiar blueprint from their lives in the fishing community. “We started out wanting to do a small marlin release tournament. As we got going, it quickly evolved into a fullsize tournament and a 501c3 non-profit organization,” explains Amanda. A small army of friends and family assembled to help them on their mission, and the Marlins for Mason Tournament was born. “We decided all money between the tournament and sponsorships will go to the Dravet Syndrome Foundation to help fund research and develop better treatment opportunities,” she adds. Most anglers don’t need a cause to coerce them into going fishing, but many teams— some from as far away as Costa Rica and Florida—seem to have gone out of their way to add this brand-new event to their summer fishing itineraries along the Mid-Atlantic. In part this was also due to Marlins for Mason being aptly timed in the season to serve as a pre-fishing event to the White Marlin Open, one of the biggest billfish tournaments in the world. The Prathers also worked closely with the Ocean City Marlin Club and collaborated with the club’s Heels and Reels Ladies Tournament. The Marlins for Mason rules were designed so lady angling teams could enter both events simultaneously during that first weekend of August, and other team entries were welcomed too. An impressive 68 boats fished the inaugural event in 2023 with a roster of 375 anglers. Tack on an incredible outpouring of support from 90 sponsors and hundreds of donors participating in silent and live auctions, and the tournament exceeded expectations by every measure. These efforts resulted in raising $312,458 donated entirely to the Dravet Syndrome Foundation (DSF) to put towards researching a cure and treatment breakthroughs. It was also the largest donation the organization had ever received and certainly opened the foundation’s eyes to the incredible opportunities and generosity the offshore fishing community can muster! Amanda reports that the Executive Director and other top team members from DSF will be in attendance for the 2nd edition of the Marlins for Mason tournament when activities get under way this August in Ocean City. Mason was able to attend the year one awards ceremony and cocktail party, and his parents say he and sister Abigail love fishing and going for boat rides. Due to Mason’s seizures and fear of being too far away from medical assistance, he has not been able to go offshore fishing yet, but the family hopes he will be able to someday. “This condition impacts every aspect of life, with no cure and few effective treatment options,” Amanda explains. “A sad reality of Dravet is that many children pass away before adulthood, so our mission is to increase awareness and continue to raise money for the foundation, so we can help find better treatment options and someday, hopefully a cure.” After hearing the Prathers’ story and learning more about Dravet Syndrome, we hope everyone can agree that this is a cure worth catching and an event well worth supporting. Learn more about Dravet Syndrome: dravetfoundation.org Fish or Support Marlins for Mason: marlinsformason.com 43 2024 SEASON
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