Page 8 - PGA Community News - December '24

December 2024
Page 8, PGA C.A.N.! 2 Spaces December 2024

Drum Roll Please ...

Jupiter Law Center’s 19th cause. Photo ops in front of a blanket

Annual Fundraiser Benefiting of draped gold tassels adorned with
famous album covers and disco balls
The Aicardi Syndrome set the mood and the food, drinks and
service from Tequesta Country Club
Foundation Is A Huge Hit! staff made it a rocking (and rolling!)
good time.
Jupiter Law Center and its guests rocked and rolled at its “Because the condition is so rare
annual costume party fundraising event to benefit the Aicardi and affects such a small population,
Syndrome Foundation, a 501(c)(3) volunteer-based nonprofit research is just so limited, and the only
organization dedicated to funding research and conferences to way for us as families to encourage
raise awareness of Aicardi Syndrome and improve the lives institutions to delve deeper into the
of Aicardi children and their families. Last year brought out causes of Aicardi Syndrome is to fund
characters from Saturday Night Live!, bringing tons of laughs research grants,” Adam Gumson stated.
and improv. This year, it was ivory keys on dueling Howl at “And the family conferences are so
the Moon pianos and wooden sticks beating the drums, with essential to creating and developing
guests dressed as their favorite singer/musicians. a community of families who are
With the support of all going through the same things,
the firm’s friends, Jupiter like what medicines and diets work best to combat seizures,
Law Center has raised over what medical procedures and therapies have helped, what
$620,000 in donations equipment and other technology have improved the quality of
to the Aicardi Syndrome life” chimed in Lissa Gumson. Adam Gumson continued, “One
Foundation since 2005. family conference costs over $100,000 when calculating all of
The annual event is a the food, rooms and audio visual equipment necessary to put
passion project for Jupiter Law on a successful conference, so our party, and other families’
Center’s principal attorney, fundraising efforts, are absolutely essential to support the
Adam Gumson, and his wife continuation of the great work that the foundation does.” The
Lissa, whose oldest daughter, Gumsons have become more and more active in the foundation
Ava, was diagnosed as an over the years, with Adam lecturing at the conferences on various
infant with Aicardi Syndrome, topics such as estate planning, guardianship and fundraising, and
a rare congenital neurological assuming the presidency of the foundation this past June.
seizure disorder which inhibits Lissa handles a variety of tasks, too, and the Gumsons’
the normal development of other two children, Lilly and Zane, attend the conferences and
motor skills, sight and speech, assist with child care and speak on the sibling panel, answering
causing mild to profound questions from new families about what it is like to have a sister
developmental delays. When with Aicardi Syndrome. “Their participation has helped them
she was diagnosed, the feel like they are not alone since they get to see and meet other
Gumsons were informed that families, and especially other siblings, dealing with similar
Ava’s life expectancy was no issues, and both of them have become so much more grounded
more than two years. and empathetic by just being present at the conferences and
Now 20, Ava continues being exposed to the highs and lows of living with an Aicardi
to defy the odds. She attends child. No one wanted to be a part of this club but, if there is a
The Learning Academy on silver lining, it is that it has introduced us to such incredible
the campus of the Els Center people from all over the world and taught us and our children
of Excellence and although that there is a higher calling to help others than just being
she is non-verbal, severely concerned with ourselves. It has been incredibly rewarding
delayed and has multiple for our whole family to be so involved,” Lissa commented.
daily seizures, she is a happy, To learn more about Aicardi Syndrome, the Aicardi
joyful girl whose smile and Syndrome Foundation or Ava Shaye Gumson and/or the other
laugh lights up a room. What Aicardi girls, log on to www.aicardisyndromefoundation.org
started as a small party with and/or www.ouraicardilife.org or contact Jupiter Law Center at
friends and family hosted at (561) 744-4600 if you have any other questions about Aicardi
the Gumsons’ home in the Syndrome or about how you can help support the foundation.
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 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 Upscale Resale
with Aicardi Syndrome, there is very little money for research
and the foundation is made up entirely of volunteers (mostly Experience The Difference
the affected families and their extended family and friends).
From the sequenced head caps of ABBA to the wild hair and New and consigned furniture, unique lighting, accessories and gifts.
famous black and white face makeup of KISS to John Lennon, Complete wallpaper and fabric library for all your design needs.
Sonny and Cher, Tina Turner, Willie Nelson, Madonna and
Elvis, partygoers reached into the archives 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

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