Page 3 - Jupiter Ocean Mile - December '23

Jupiter Ocean Mile, Page 3

Live From Tequesta from page 1

Aicardi Costume Party. This
year’s October extravaganza
saw attendees dressing like
their favorite SNL character.
From the “nice” of Roseanna
Rose anna da nna t o t he
“naughty” that can’t be printed
in a polite paper (let’s just
say there were strategically
placed holiday wrapped boxes
involved), partygoers reached
into the archives for inspiration.
The muse for this annual affair
– Lissa and Adam’s daughter
Ava – came as a Spartan cheerleader (as did many others
in attendance), ready to cheer on guests who donned
costumes spanning the decades, from the early years of
Killer Bees, Blues Brothers, Land Sharks, Wild and Crazy
Guys and Father Guido Sarducci to Da Bears fans, Hans
and Franz, Wayne and Garth, Mary Katherine Gallagher,
Opera Man, and Sally O’Malley.
Classic SNL skits pulsed from big screen TVs, fun
music kept the energy high and people on their feet, there
were photo ops in front of iconic SNL backdrops and the
food and drinks from Tequesta Country Club staff dressed
as Coneheads kept everyone fueled in style.
Flint Technologies donated a laptop computer as
it has for many years, It’s Sugar contributed boxes of
Schweddy Balls, and golf-related raffle items provided delays. When she was diagnosed, the Gumsons were may not be obtainable and subsidize the cost for Aicardi
by Tequesta Country Club to ensure that spirits were high informed that Ava’s life expectancy was no more than families to attend the every-other-year Family Conference
and contributions kept coming as everyone tried their luck two years. Now 19, Ava continues to defy the odds. She where people from all over the world gather to exchange
in the evening’s games of chance. And of course, Jupiter attends The Learning Academy on the campus of the information. This, in turn, enhances each family’s ability
Law Center’s staff once again put in countless hours of Els Center of Excellence and although she is nonverbal, to care for its own Aicardi child. Since only 4,000 girls
coordination and were there for the evening, insuring severely delayed and has multiple daily seizures, she is worldwide are afflicted with Aicardi Syndrome, there is
guests were welcomed and coordinating donations and a happy, joyful girl. very little money for research and the foundation is made
raffle efforts. Adam and Lissa have become more and more involved up entirely of volunteers (mostly the affected families and
Nearly $40,000 was raised for the Aicardi Syndrome with the foundation each year. What started as a small their extended family and friends).
Foundation and more donations will continue to arrive party with friends and family hosted at the Gumsons’ To learn more about Aicardi Syndrome, the Aicardi
through the balance of the year. The event is a passion home in the early years has blossomed into a major Syndrome Foundation or Ava Shaye Gumson and/or the other
project for Adam and Lissa Gumson, whose oldest annual event now held at the Tequesta Country Club. Aicardi girls, log on to www.aicardisyndromefoundation.
daughter, Ava, was diagnosed as a baby with Aicardi The monies raised since 2006 help the foundation to org and/or www.ouraicardilife.org or contact Jupiter Law
Syndrome, a rare congenital neurological seizure disorder fund research grants at both Baylor University and the Center at (561) 744-4600 if you have any other questions

which inhibits the normal development of motor skills, University of California at San Francisco, underwrite about Aicardi Syndrome or about how you can help
sight and speech, causing mild to profound developmental the cost of wheelchairs and equipment that otherwise support the foundation.

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