Page 2 - Jupiter Ocean Mile - December '24

Page 2, Jupiter Ocean Mile

Drum Roll Please ... from page 1 many others in attendance),
bobbing her head and cheering
Now 20, Ava continues on those who boogied on the
to defy the odds. She attends dance floor. The tip jars on
The Learning Academy on the pianos were lined with
the campus of the Els Center generous donations as guests
of Excellence and although requested their favorite songs,
she is non-verbal, severely with 100 percent of the band’s
delayed and has multiple tips donated back to the cause.
daily seizures, she is a happy, Photo ops in front of a blanket
joyful girl whose smile and of draped gold tassels adorned
laugh lights up a room. What with famous album covers and
started as a small party with disco balls set the mood and
friends and family hosted at the food, drinks and service
the Gumsons’ home in the from Tequesta Country Club
early years has blossomed staff made it a rocking (and
into a major annual event rolling!) good time.
held for the last five years at “Because the condition is so rare and affects such a small
Tequesta Country Club. The population, research is just so limited, and the only way for us
monies raised since 2006 as families to encourage institutions to delve deeper into the
help the foundation fund causes of Aicardi Syndrome is to fund research grants,” Adam
research grants at both Baylor Gumson stated. “And the family conferences are so essential to
University and the University creating and developing a community of families who are all
of California at San Francisco going through the same things, like what medicines and diets
and underwrite the cost for work best to combat seizures, what medical procedures and
Aicardi families to attend therapies have helped, what equipment and other technology
the every-other-year family have improved the quality of life” chimed in Lissa Gumson.
conference where people Adam Gumson continued, “One family conference costs over
from all over the world gather to exchange information. This, $100,000 when calculating all of the food, rooms and audio
in turn, enhances each family’s ability to care for its own visual equipment necessary to put on a successful conference,
Aicardi child. Since only 4,000 girls worldwide are afflicted so our party, and other families’ fundraising efforts, are
with Aicardi Syndrome, there is very little money for research absolutely essential to support the continuation of the great
and the foundation is made up entirely of volunteers (mostly work that the foundation does.” The Gumsons have become
the affected families and their extended family and friends). more and more active in the foundation over the years, with being exposed to the highs and lows of living with an Aicardi
From the sequenced head caps of ABBA to the wild hair and Adam lecturing at the conferences on various topics such as child. No one wanted to be a part of this club but, if there is a
famous black and white face makeup of KISS to John Lennon, estate planning, guardianship and fundraising, and assuming silver lining, it is that it has introduced us to such incredible
Sonny and Cher, Tina Turner, Willie Nelson, Madonna and the presidency of the foundation this past June. people from all over the world and taught us and our children
Elvis, partygoers reached into the archives for inspiration. Lissa handles a variety of tasks, too, and the Gumsons’ that there is a higher calling to help others than just being
The muse for this annual affair – Lissa and Adam’s other two children, Lilly and Zane, attend the conferences and concerned with ourselves. It has been incredibly rewarding
daughter Ava – came as a Pink Lady from Grease (as did assist with child care and speak on the sibling panel, answering for our whole family to be so involved,” Lissa commented.
questions from new families about what it is like to have a sister To learn more about Aicardi Syndrome, the Aicardi
with Aicardi Syndrome. “Their participation has helped them Syndrome Foundation or Ava Shaye Gumson and/or the other
feel like they are not alone since they get to see and meet other Aicardi girls, log on to www.aicardisyndromefoundation.org
families, and especially other siblings, dealing with similar and/or www.ouraicardilife.org or contact Jupiter Law Center at
issues, and both of them have become so much more grounded (561) 744-4600 if you have any other questions about Aicardi
and empathetic by just being present at the conferences and Syndrome or about how you can help support the foundation.

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