Page 2 - Jupiter West - December '24

Page 2, Jupiter West

Drum Roll Please from page 1
was diagnosed, the Gumsons were informed that Ava’s life Medicare Corner With Kathy O

expectancy was no more than two years.
Now 20, Ava continues to defy the odds. She attends Since the Medicare move, your chance to switch plans begins the month before
The Learning Academy on the campus of the Els Center of Annual Enrollment Period the month you move and continues for two full months after
Excellence and although she is non-verbal, severely delayed and is ending Dec. 7, I’d like you move or 2) If you tell your plan after you move, your
has multiple daily seizures, she is a happy, joyful girl whose to offer some general chance to switch plans begins the month you tell your plan,
smile and laugh lights up a room. What started as a small party Medicare tips and advice. plus two more full months.
with friends and family hosted at the Gumsons’ home in the early The single most It is also important to change your address with
years has blossomed into a major annual event held for the last important thing you can do Medicare. This is done through Social Security by phone
five years at Tequesta Country Club. The monies raised since for yourself is to have your or online at ssa,gov.
2006 help the foundation fund research grants at both Baylor own agent. Your agent is Why is Social Security involved when I need services
University and the University of California at San Francisco an amazing resource to with Medicare? Social Security (SSA) is the gatekeeper for
and underwrite the cost for Aicardi families to attend the every- reorder lost cards, answer Medicare. Your earnings are tracked by SSA and you must
other-year family conference where people from all over the benefit questions, give a qualify with 40 work quarters to receive Medicare. Medicare
world gather to exchange information. This, in turn, enhances list of specialists, review notices, claim statements and so also relies on SSA to determine your Part B Premium and if
each family’s ability to care for its own Aicardi child. Since only much more. Your agent can even answer questions about you receive SSA benefits, to collect your premium. If you
4,000 girls worldwide are afflicted with Aicardi Syndrome, there those pesky TV ads and all the gossip from your friends are not receiving SSA benefits, you will be billed quarterly
is very little money for research and the foundation is made up about Medicare. Best of all, there is no cost to have an agent. by Medicare.
entirely of volunteers (mostly the affected families and their Moving? Do not change your address with your If you still need to review or change your Medicare
extended family and friends). Advantage, supplement or drug plan carrier prior to your plan, Open Enrollment is Jan. 1 to Mar. 30 and you may
move without first speaking to your agent – if you don’t have qualify for a Special Enrollment. Call me! If you have new
one, find one. When you call member service and change Medicare Topic suggestions, email me at czak82@aol.com.
your address, they may cancel your plan at the end of the I speak Medicare: Supplement, Drug Plan and
current month, even if you don’t move until next month. Advantage Plan.
This could unknowingly leave you with no coverage. For your free Medicare Plan review please call me.
The Special Enrollment Period for moving outside your Kathy Olejniczak, Agent, at (561) 835-5413 or cell/text
plan service rules are: 1) If you tell your plan before you (561) 212-7640.

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

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