Page 2 - Lifestyles in Palm Beach Gardens - December '24

Page 2, Lifestyles in Palm Beach Gardens

Drum Roll Please from page 1 the presidency of the foundation
this past June.
with friends and family hosted at the Gumsons’ home in the early Lissa handles a variety of tasks,
years has blossomed into a major annual event held for the last too, and the Gumsons’ other two
five years at Tequesta Country Club. The monies raised since children, Lilly and Zane, attend the
2006 help the foundation fund research grants at both Baylor conferences and assist with child
University and the University of California at San Francisco care and speak on the sibling panel,
and underwrite the cost for Aicardi families to attend the every- answering questions from new
other-year family conference where people from all over the families about what it is like to have
world gather to exchange information. This, in turn, enhances a sister with Aicardi Syndrome.
each family’s ability to care for its own Aicardi child. Since only “Their participation has helped
4,000 girls worldwide are afflicted with Aicardi Syndrome, there them feel like they are not alone
is very little money for research and the foundation is made up since they get to see and meet
entirely of volunteers (mostly the affected families and their other families, and especially other
extended family and friends). siblings, dealing with similar issues, and both of them have incredibly rewarding for our whole family to be so involved,”
From the sequenced head caps of ABBA to the wild hair and become so much more grounded and empathetic by just being Lissa commented.
famous black and white face makeup of KISS to John Lennon, present at the conferences and being exposed to the highs and To learn more about Aicardi Syndrome, the Aicardi
Sonny and Cher, Tina Turner, Willie Nelson, Madonna and lows of living with an Aicardi child. No one wanted to be a Syndrome Foundation or Ava Shaye Gumson and/or the other
Elvis, partygoers reached into the archives for inspiration. part of this club but, if there is a silver lining, it is that it has Aicardi girls, log on to www.aicardisyndromefoundation.org
The muse for this annual affair – Lissa and Adam’s daughter introduced us to such incredible people from all over the world and/or www.ouraicardilife.org or contact Jupiter Law Center at
Ava – came as a Pink Lady from Grease (as did many others and taught us and our children that there is a higher calling to (561) 744-4600 if you have any other questions about Aicardi
in attendance), bobbing her head and cheering on those who help others than just being concerned with ourselves. It has been 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 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 Time for
and other technology have improved the quality of life”
chimed in Lissa Gumson. Adam Gumson continued, “One
family conference costs over $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 a change?
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 Burns Wealth Management Group
various topics such as estate
planning, guardianship and
fundraising, and assuming

Robert Burns
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Managing Director
Wealth Partner, Portfolio Manager
3825 PGA Blvd, Floor 9,
Palm Beach Gardens, Florida 33410
561.694.5666
robert.m.burns@jpmorgan.com
jpmorgan.com/burnswm

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