Page 6 - The Shores of Jupiter - December '24

Page 6, The Shores
Drum Roll Please ...

Jupiter Law Center’s 19th both Baylor University and the University of California at San work that the foundation does.” The Gumsons have become
Annual Fundraiser Benefiting Francisco and underwrite the cost for Aicardi families to attend more and more active in the foundation over the years, with
the every-other-year family conference where people from all
Adam lecturing at the conferences on various topics such as
The Aicardi Syndrome over the world gather to exchange information. This, in turn, estate planning, guardianship and fundraising, and assuming
enhances each family’s ability to care for its own Aicardi child.
the presidency of the foundation this past June.
Foundation Is A Huge Hit! Since only 4,000 girls worldwide are afflicted with Aicardi Lissa handles a variety of tasks, too, and the Gumsons’
Syndrome, there is very little money for research and the other two children, Lilly and Zane, attend the conferences and
Jupiter Law Center and its guests rocked and rolled at its foundation is made up entirely of volunteers (mostly the affected assist with child care and speak on the sibling panel, answering
annual costume party fundraising event to benefit the Aicardi families and their extended family and friends). questions from new families about what it is like to have a sister
Syndrome Foundation, a 501(c)(3) volunteer-based nonprofit From the sequenced head caps of ABBA to the wild hair and with Aicardi Syndrome. “Their participation has helped them
organization dedicated to funding research and conferences famous black and white face makeup of KISS to John Lennon, feel like they are not alone since they get to see and meet other
to raise awareness of Aicardi Syndrome and improve the lives Sonny and Cher, Tina Turner, Willie Nelson, Madonna and Elvis, families, and especially other siblings, dealing with similar
of Aicardi children and their families. Last year brought out partygoers reached into the archives for inspiration. issues, and both of them have become so much more grounded
characters from Saturday Night Live!, bringing tons of laughs The muse for this annual affair – Lissa and Adam’s daughter and empathetic by just being present at the conferences and being
and improv. This year, it was ivory keys on dueling Howl at the Ava – came as a Pink Lady from Grease (as did many others exposed to the highs and lows of living with an Aicardi child.
Moon pianos and wooden sticks beating the drums, with guests in attendance), bobbing her head and cheering on those who No one wanted to be a part of this club but, if there is a silver
dressed as their favorite singer/musicians. boogied on the dance floor. The tip jars on the pianos were lined lining, it is that it has introduced us to such incredible people
With the support of the firm’s friends, Jupiter Law Center has with generous donations as guests requested their favorite songs, from all over the world and taught us and our children that there
raised over $620,000 in donations with 100 percent of the band’s tips donated back to the cause. is a higher calling to help others than just being concerned with
to the Aicardi Syndrome Photo ops in front of a blanket of draped gold tassels adorned ourselves. It has been incredibly rewarding for our whole family
Foundation since 2005. with famous album covers and disco balls set the mood and the to be so involved,” Lissa commented.
The annual event is a passion food, drinks and service from Tequesta Country Club staff made To learn more about Aicardi Syndrome, the Aicardi
project for Jupiter Law Center’s it a rocking (and rolling!) good time. Syndrome Foundation or Ava Shaye Gumson and/or the other
principal attorney, Adam Gumson, “Because the condition is so rare and affects such a small Aicardi girls, log on to www.aicardisyndromefoundation.org
and his wife Lissa, whose oldest population, research is just so limited, and the only way for us and/or www.ouraicardilife.org or contact Jupiter Law Center at
daughter, Ava, was diagnosed as as families to encourage institutions to delve deeper into the (561) 744-4600 if you have any other questions about Aicardi
an infant with Aicardi Syndrome, causes of Aicardi Syndrome is to fund research grants,” Adam Syndrome or about how you can help support the foundation.
a rare congenital neurological Gumson stated. “And the family conferences
seizure disorder which inhibits are so essential to creating and developing
the normal development of motor a community of families who are all going
skills, sight and speech, causing through the same things, like what medicines
mild to profound developmental and diets work best to combat seizures,
delays. When she was diagnosed, what medical procedures and therapies have
the Gumsons were informed that helped, what equipment and other technology
Ava’s life expectancy was no have improved the quality of life” chimed in
more than two years. Lissa Gumson. Adam Gumson continued,
Now 20, Ava continues to “One family conference costs over $100,000
defy the odds. She attends The when calculating all of the food, rooms and
Learning Academy on the campus audio visual equipment necessary to put on a
of the Els Center of Excellence successful conference, so our party, and other
and although she is non-verbal, families’ fundraising efforts, are absolutely
severely delayed and has multiple essential to support the continuation of the great
daily seizures, she is a happy,
joyful girl whose smile and laugh
lights up a room. What started as
a small party with friends and Peripheral
family hosted at the Gumsons’
home in the early years has Neuropathy?
blossomed into a major annual
event held for the last five years
at Tequesta Country Club. The
monies raised since 2006 help the FREE Consultation
foundation fund research grants at
for Acupuncture

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