- April 26, 2024
-
-
Loading
Loading
by Terie Hynish
Public Relations Director for the Krewe of the 13
Pirates and their families from the Krewe of the 13 joined the 15th-annual Fun Coast Buddy Walk on Oct. 17, in Flagler Beach, sponsored by the Fun Coast Down Syndrome Association.
Originally scheduled for World Down Syndrome Day (March 21), FCDSA was forced to cancel due to the outbreak of COVID-19. The Buddy Walk is FCDSA’s main event of the year and is designed to bring awareness of Down syndrome to community, as well as supporting their annual budget.
The annual event gives people with Down syndrome an opportunity to show their abilities and potential rather than what the world tells them they can’t do. Since many people with Down syndrome are at high risk for COVID-19, the group chose to make the event virtual with teams spread throughout Flagler and Volusia counties. Individual teams were encouraged to celebrate on their own, and to make videos to post on the group’s social media platforms.
“This is the third year the Krewe of the 13 have joined our festivities, and they have been a highlight of the Buddy Walk each year," said Paula Wilburn, FCDSA’s executive director. “Our young adults especially love getting pictures and talking with the Krewe. I was thrilled when Proper Roger (Roger Allen, Krewe captain) asked if it would be possible for some Pirates to join any of the teams this year.”
Being quarantined for so long has been especially difficult for the self-advocates (the teens, young adults and adults who benefit from FCDSA). Palm Coast resident Jennifer Pietrosante, one such self advocate, found a unique way to greet friends: She bows slightly and says “Namaste.” The 36-year old has a bit of silly humor, though. When the greeting is returned, Pietrosante will respond, “You may bow before the Queen.”
“The title of ‘Queen’ started when Jen was in her 20s,” said Wilburn. “She loved watching the Queen of Hearts, in 'Alice in Wonderland,' when she said, ‘Off with her head!’ Family and close friends will play with her and say, ‘I’m the queen!' and Jen will say as loudly as she can, ‘I am the Queen!”
Jennifer has been with FCDSA since she was 28 – she’s now 36.
“Queen Jen has been thrilled with the Pirates every year,” said Wilburn. “She’s been quarantined since January when we almost lost her to bilateral pneumonia. The Buddy Walk was her first time out in public, and when she found out the Pirates were going to be at her walk she danced with joy.”
The Krewe of the 13 Inc. is a 501c3 registered public charity. Members of the Krewe (representing Flagler, St. Johns and Duval counties) raise funds throughout the year to help people with clear solutions when they are experiencing “dire circumstances.” The Krewe, which was formed in 2015, began helping local families in January of 2018 and since that date, have provided eleven families with life changing help and opportunities with a total donation of $33,500.
In addition to their fundraising efforts, they also receive monetary donations through the generosity of their sponsors, including Flagler Health+, State Farm Insurance, The Bailey Group and MarineLand. The Krewe will be hosting their primary fundraising event, the annual Casino Night, on March 20, 2021 at the Palm Coast Community Center. Please contact Terie Hynish at [email protected] for more information.
Editor's Note: One of the pirates walking in Saturday’s events had a personal reason for joining in the walk. “I’m here today, not only to show support for the community from our Pirate Krewe, but in honor of my 30-year-old niece, Alexandra, who has Downs," said Terie Hynish, Public Relations Director for the Krewe. “It wasn’t so long ago that these children and young adults were hidden away in embarrassment. Today, we realize they can live amazing lives with purpose – and that is, in a large part, due to building awareness through events such as this.”
