Page 8 - Southern Exposure - December '24

Page 8, Southern Exposure

soutHern profiLe from page 1

she is a happy, joyful girl whose smile and
laugh lights up a room. 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 held
for the last five years at Tequesta Country
Club. The monies raised since 2006 help
the foundation fund research grants at both
Baylor University and the University of
California at San Francisco and underwrite
the cost for Aicardi families to attend the every-other-year it is like to have a sister with Aicardi
family conference where people from all over the world Syndrome. “Their participation has helped
gather to exchange information. This, in turn, enhances them feel like they are not alone since they get to see and higher calling to help others than just being concerned
each family’s ability to care for its own Aicardi child. meet other families, and especially other siblings, dealing with ourselves. It has been incredibly rewarding for our
Since only 4,000 girls worldwide are afflicted with Aicardi with similar issues, and both of them have become so whole family to be so involved,” Lissa commented.
Syndrome, there is very little money for research and the much more grounded and empathetic by just being present To learn more about Aicardi Syndrome, the Aicardi
foundation is made up entirely of volunteers (mostly the at the conferences and being exposed to the highs and lows Syndrome Foundation or Ava Shaye Gumson and/or the other
affected families and their extended family and friends). of living with an Aicardi child. No one wanted to be a Aicardi girls, log on to www.aicardisyndromefoundation.
From the sequenced head caps of ABBA to the wild part of this club but, if there is a silver lining, it is that it org and/or www.ouraicardilife.org or contact Jupiter Law
hair and famous black and white face makeup of KISS to has introduced us to such incredible people from all over Center at (561) 744-4600 if you have any other questions
John Lennon, Sonny and Cher, Tina Turner, Willie Nelson, the world and taught us and our children that there is a about Aicardi Syndrome or about how you can help
Madonna and Elvis, partygoers reached into the archives support the foundation.
for inspiration.
The muse for this annual
affair – Lissa and Adam’s
daughter Ava – came as
a Pink Lady from Grease
(as did many others in
attendance), bobbing her
head and cheering on
those who boogied on the
dance floor. The tip jars
on the pianos were lined
with generous donations
as guests requested their
favorite songs, with 100
percent of the band’s tips
donated back to the cause. Photo ops in front of a blanket
of draped gold tassels adorned with famous album covers
and disco balls set the mood and the food, drinks and
service from Tequesta Country Club staff made it a
rocking (and rolling!) good time.
“Because the condition is so rare and affects such a
small population, research is just so limited, and the only
way for us as families to encourage institutions to delve
deeper into the causes of Aicardi Syndrome is to fund
research grants,” Adam Gumson stated. “And the family
conferences are so essential to creating and developing
a community of families who are all going through the
same things, like what medicines and diets work best to
combat seizures, what medical procedures and therapies
have helped, what equipment and other technology have 747-PALM
improved the quality of life” chimed in Lissa Gumson.
Adam Gumson continued, “One family conference 747-7256
costs aover $100,000 when calculating all of the food,
rooms and audio visual equipment necessary to put on a
successful conference, so our party, and other families’
fundraising efforts, are absolutely essential to support
the continuation of the great work that the foundation
does.” The Gumsons have become more and more active
in the foundation over the years, with Adam lecturing
at the conferences on various topics such as estate
planning, guardianship and fundraising, and assuming
the presidency of the foundation this past June.
Lissa handles a variety of tasks, too, and the Gumsons’
other two children, Lilly and Zane, attend the conferences
and assist with child care and speak on the sibling panel,
answering questions from new families about what
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