Page 2 - Jupiter Spotlight - December '24

Page 2, Jupiter Spotlight

Drum Roll Please from page 1 equipment and other technology
have improved the quality of life”
Now 20, Ava continues to defy the odds. She attends chimed in Lissa Gumson. Adam
The Learning Academy on the campus of the Els Center of Gumson continued, “One family
Excellence and although she is non-verbal, severely delayed and conference costs over $100,000
has multiple daily seizures, she is a happy, joyful girl whose when calculating all of the food,
smile and laugh lights up a room. What started as a small party rooms and audio visual equipment
with friends and family hosted at the Gumsons’ home in the early necessary to put on a successful
years has blossomed into a major annual event held for the last conference, so our party, and other
five years at Tequesta Country Club. The monies raised since families’ fundraising efforts, are
2006 help the foundation fund research grants at both Baylor absolutely essential to support
University and the University of California at San Francisco the continuation of the great work
and underwrite the cost for Aicardi families to attend the every- that the foundation does.” The
other-year family conference where people from all over the Gumsons have become more and
world gather to exchange information. This, in turn, enhances more active in the foundation over the years, with Adam exposed to the highs and lows of living with an Aicardi child.
each family’s ability to care for its own Aicardi child. Since only lecturing at the conferences on various topics such as estate No one wanted to be a part of this club but, if there is a silver
4,000 girls worldwide are afflicted with Aicardi Syndrome, there planning, guardianship and fundraising, and assuming the lining, it is that it has introduced us to such incredible people
is very little money for research and the foundation is made up presidency of the foundation this past June. from all over the world and taught us and our children that there
entirely of volunteers (mostly the affected families and their Lissa handles a variety of tasks, too, and the Gumsons’ is a higher calling to help others than just being concerned with
extended family and friends). other two children, Lilly and Zane, attend the conferences and ourselves. It has been incredibly rewarding for our whole family
From the sequenced head caps of ABBA to the wild hair and assist with child care and speak on the sibling panel, answering to be so involved,” Lissa commented.
famous black and white face makeup of KISS to John Lennon, questions from new families about what it is like to have a sister To learn more about Aicardi Syndrome, the Aicardi
Sonny and Cher, Tina Turner, Willie Nelson, Madonna and Elvis, with Aicardi Syndrome. “Their participation has helped them Syndrome Foundation or Ava Shaye Gumson and/or the other
partygoers reached into the archives for inspiration. feel like they are not alone since they get to see and meet other Aicardi girls, log on to www.aicardisyndromefoundation.org
The muse for this annual affair – Lissa and Adam’s daughter families, and especially other siblings, dealing with similar and/or www.ouraicardilife.org or contact Jupiter Law Center at
Ava – came as a Pink Lady from Grease (as did many others issues, and both of them have become so much more grounded (561) 744-4600 if you have any other questions about Aicardi
in attendance), bobbing her head and cheering on those who and empathetic by just being present at the conferences and being Syndrome or about how you can help support the foundation.
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 $ $ 100 OFF $ 250
us as families to encourage institutions to delve deeper into 39Usually 95
$
the causes of Aicardi Syndrome is to fund research grants,” SERVICE CALL WITH ANY NEW UV LIGHT WITH ANY
Adam Gumson stated. “And the family conferences are ANY A/C REPAIR WATER HEATER NEW INSTALLATION
( 750 Value)
$
so essential to creating and developing a community of CALL FOR SERVICE CALL FOR SERVICE CALL FOR SERVICE
families who are all going through the same things, like 561-741-2825 561-741-2825 561-741-2825
what medicines and diets work best to combat seizures, Not valid with any other discounts, Not valid with any other discounts, Not valid with any other discounts,
what medical procedures and therapies have helped, what offers, or coupons. Limit 1 discount offers, or coupons. Limit 1 discount offers, or coupons. Limit 1 discount
per transaction. Expires 1/04/25. per transaction. Expires: 1/04/25. per transaction. Expires: 1/04/25.

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