Page 3 - Jupiter West - December '23
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Jupiter West, Page 3

      Live From Tequesta from page 1                       Flint Technologies donated a laptop computer
                                                         as it has for many years, It’s Sugar contributed
      for this annual affair – Lissa and Adam’s daughter Ava   boxes of Schweddy Balls, and golf-related raffle
      –  came  as  a  Spartan  cheerleader  (as  did  many  others   items provided by Tequesta Country Club to
      in attendance), ready to cheer on guests who donned   ensure that spirits were high and contributions
      costumes spanning the decades, from the early years of   kept coming as everyone tried their luck in
      Killer Bees, Blues Brothers, Land Sharks, Wild and Crazy   the evening’s games of chance. And of course,
      Guys and Father Guido Sarducci to Da Bears fans, Hans   Jupiter Law Center’s staff once again put in
      and Franz, Wayne and Garth, Mary Katherine Gallagher,   countless hours of coordination and were there
      Opera Man, and Sally O’Malley.                     for the evening, insuring guests were welcomed
        Classic SNL skits pulsed from big screen TVs, fun music   and coordinating donations and raffle efforts.
      kept the energy high and people on their feet, there were     Nearly $40,000 was raised for the Aicardi
      photo ops in front of iconic SNL backdrops and the food   Syndrome Foundation and more donations will
      and drinks from Tequesta Country Club staff dressed as   continue to arrive through the balance of the
      Coneheads kept everyone fueled in style.           year. The event is a passion project for Adam
                                                         and Lissa Gumson, whose oldest daughter, Ava,
                                                         was diagnosed as a baby
                                                         with Aicardi Syndrome,
                                                         a rare congenital
                                                         neurological  seizure
                                                         disorder which inhibits
                                                         the normal development
                                                         of motor skills, sight and
                                                         speech, causing mild to
                                                         profound developmental
                                                         delays. When  she  was
                                                         diagnosed, the Gumsons
                                                         were informed  that
                                                         Ava’s life expectancy
                                                         was no more than two
                                                         years. Now 19,  Ava
                                                         continues to defy the
                                                         odds. She attends The Learning Academy on the campus of   Conference where people from all over the world gather to
                                                         the Els Center of Excellence and although she is nonverbal,   exchange information. This, in turn, enhances each family’s
                                                         severely delayed and has multiple daily seizures, she is a   ability to care for its own Aicardi child. Since only 4,000
                                                         happy, joyful girl.                               girls worldwide are afflicted with Aicardi Syndrome, there
                                                           Adam and Lissa have become more and more involved   is very little money for research and the foundation is made
                                                         with the foundation each year. What started as a small party   up entirely of volunteers (mostly the affected families and
                                                         with friends and family hosted at the Gumsons’ home in the   their extended family and friends).
                                                         early years has blossomed into a major annual event now     To learn more about Aicardi Syndrome, the Aicardi
                                                         held at the Tequesta Country Club. The monies raised since   Syndrome Foundation or Ava Shaye Gumson and/or the other
                                                         2006 help the foundation to fund research grants at both   Aicardi girls, log on to www.aicardisyndromefoundation.
                                                         Baylor University and the University of California at San   org and/or www.ouraicardilife.org or contact Jupiter Law
                                                         Francisco, underwrite the cost of wheelchairs and equipment   Center at (561) 744-4600 if you have any other questions

                                                         that otherwise may not be obtainable and subsidize the cost   about Aicardi Syndrome or about how you can help support
                                                         for Aicardi families to attend the every-other-year Family   the foundation.

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