Page 3 - Lifestyles in Palm Beach Gardens - December '23

Lifestyles in Palm Beach Gardens, Page 3

Live From Tequesta from page 1 Classic SNL skits pulsed from big screen TVs, fun Ava, was diagnosed
music kept the energy high and people on their feet, there as a baby w ith
The signature event is an Annual Halloween Aicardi were photo ops in front of iconic SNL backdrops and the Aicardi Syndrome,
Costume Party. This year’s October extravaganza saw food and drinks from Tequesta Country Club staff dressed a rare congenital
attendees dressing like their favorite SNL character. From as Coneheads kept everyone fueled in style. neurological seizure
the “nice” of Roseanna Roseannadanna to the “naughty” Flint Technologies donated a laptop computer as it has for dis order w hich
that can’t be printed in a polite paper (let’s just say there many years, It’s Sugar contributed boxes of Schweddy Balls, inhibits the normal
were strategically placed holiday wrapped boxes involved), and golf-related raffle items provided by Tequesta Country development of
partygoers reached into the archives for inspiration. The muse Club to ensure that spirits were high and contributions kept motor skills, sight
for this annual affair – Lissa and Adam’s daughter Ava – came coming as everyone tried their luck in the evening’s games of and speech, causing
as a Spartan cheerleader (as did many others in attendance), chance. And of course, Jupiter Law Center’s staff once again mild to profound
ready to cheer on guests who donned costumes spanning the put in countless hours of coordination and were there for the developmental
decades, from the early years of Killer Bees, Blues Brothers, evening, insuring guests were welcomed and coordinating delays. When she
Land Sharks, Wild and Crazy Guys and Father Guido Sarducci donations and raffle efforts. was diagnosed,
to Da Bears fans, Hans and Franz, Wayne and Garth, Mary Nearly $40,000 was raised for the Aicardi Syndrome the Gumsons were
Katherine Gallagher, Opera Man, and Sally O’Malley. Foundation and more donations will continue to arrive informed that Ava’s
through the balance of the year. The event is a passion life expectancy was no more than two years. Now 19,
project for Adam and Lissa Gumson, whose oldest daughter, Ava continues to defy the odds. She attends The Learning
Academy on the campus of the Els Center of Excellence
and although she is nonverbal, severely delayed and has
multiple daily seizures, she is a happy, joyful girl.
Adam and Lissa have become more and more involved
with the foundation each year. What started as a small
party with friends and family hosted at the Gumsons’
home in the early years has blossomed into a major
annual event now held at the Tequesta Country Club.
The monies raised since 2006 help the foundation to
fund research grants at both Baylor University and the
University of California at San Francisco, underwrite
the cost of wheelchairs and equipment that otherwise
may not be obtainable and subsidize the cost for Aicardi
families to attend the every-other-year Family Conference
where people from all over the world gather to exchange
information. This, in turn, enhances each family’s ability
to care for its own Aicardi child. Since only 4,000 girls
worldwide are afflicted with Aicardi Syndrome, there is
very little money for research and the foundation is made
up entirely of volunteers (mostly the affected families and
their extended family and friends).
To learn more about Aicardi Syndrome, the Aicardi
Syndrome Foundation or Ava Shaye Gumson and/or the other
Aicardi girls, log on to www.aicardisyndromefoundation.
org and/or www.ouraicardilife.org or contact Jupiter Law
Center at (561) 744-4600 if you have any other questions
about Aicardi Syndrome or about how you can help
support the foundation.

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