Tag Archives: Community

World Down Syndrome Day & A TRULY Special Delivery

The kind folks at Truly Nolen of Orlando recently introduced us to a very talented teenager named Faith-Christina who loves quilting. “I have been making quilts and other sewing crafts for almost two years.  I decided that I wanted to sell them to people online and also raise awareness of people like me,” says Faith-Christina on her website, www.imperfectcreations.net.

Quilting Master Faith-Christina Duncan shares her love with Down Syndrome Association of Central Florida

Quilting Master Faith-Christina Duncan shared her love with DSACF by making them a one-of-a-kind quilt!

“People who are told they can never do anything just because of a ‘handicap.’ When people tell me that I can’t do something because I’m different, because I have a disability, I look at them and tell them not to dis my ability. I can do the same things you can. I just like to do them my own way,” she says. (Shhh! A little Buddy told us we may see more awesome quilts from Faith-Christina pop up around town! Maybe at the Best Buddies Friendship Walk at Lake Eola on May 7th?)

Her dad, Mike Duncan, works at Truly Nolen as a Trainer for their Eastern Region. Faith-Christina, Mike, and mom Nancy have been have been involved with the Down Syndrome Association of Central Florida since 2005. Why? Well, for one, DSACF is a wonderful organization who has served over 1,000 families and 12,000 friends and supporters in the Central Florida community for the last 25 years. Also, Faith-Christina was born in 2000 with Trisomy 21, also known as Down syndrome.

DSACF is the proud host of the Florida State Down Syndrome Conference, a free medical clinic in partnership with Arnold Palmer Hospital’s Developmental Center, free family fun days at Universal Studios and SeaWorld, free IEP support and educational evaluations from the Down Syndrome Center (Jacksonville) and much more. 

According to their website, “Truly Nolen of America partners with and supports many nonprofit organizations in the various local communities we serve across the country. We encourage our employees to participate in local events and we support them and their families. We send our kid and family favorite mouse car limo as well as our world famous antiques to events when possible.” And boy did they! Seriously, check out their Community Express truck. It’s a food truck and entertainment party on wheels!

Amy Van Bergen is DSACF’s current Executive Director, and will be retiring this month. Amy will pass her torch to longtime volunteer Interim Executive Director Ed DeAguilera. To celebrate Amy’s years of dedication, advocacy and service to this wonderful organization, Mike and Truly Nolen commissioned Faith-Christina make a special quilt and handmade receiving blankets which were presented to a very surprised Amy!

Truly Nolen Community Express

Here comes the Truly Nolen Community Express!

Mike and the Truly Nolen team took this surprise even further. A fleet of Truly Nolen mousecars left the Orlando office, led by their Community Express Truck, drove in parade formation down I-4 to Down Syndrome of Central Florida’s office on Wymore Road in Winter Park, set up a truly wonderful picnic, and made Amy and her entire DSACF team lunch! Look at Cars Website to learn more. (Want a TRULY rad mouse motorcade or party in your community?  Fill out and submit this form when seeking a request, donation or pledge.)

Truly Nolen DSACF

The Truly Nolen Community Express sets up a picnic lunch!

Which brings us to March 21st. To most people, this was simply another Monday. To others, March 21st is when a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome.

Why the 21st? According to Down Syndrome International, “The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

On 19 December 2011, the United Nations General Assembly declared 21 March as World Down Syndrome Day (A/RES/66/149). Global activities and events around WDSD each year, organised by persons with Down syndrome, their families, friends and advocates, work to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

In doing research for this post, Top 5 readers Mary and Phil Daikos from New York shared with us their son Evan’s story; how Mary first felt about his diagnosis of Down syndrome, and how she feels now. We’d love for you to read it and smile.

As many of you know, we were blindsided by the diagnosis of Down syndrome when Evan was 10 months old. To say we were shocked and uncertain as to what that meant for us would be an understatement. But I have a crystal clear memory of being upset about a week post-diagnosis and looking down and seeing Evan staring up at me as if to say, “What’s wrong, Mom?” That was my a-ha moment. Because, to him, nothing was wrong. Nothing had changed! Nothing.Has.Changed.

Fast forward nearly 5 years… “Down syndrome” has very little effect on our daily lives. I only really think about it when advocating for him, or when dealing with prejudgements based on his diagnosis. To us and those who know him, he’s just smart, silly, funny, crazy Evan. He has the kindest heart, is the best listener, and the biggest helper ever. Today, after school, he told me I was his “best friend”. He is my heart.

So thankful for him and every one of his beautiful chromosomes. Happy World Down Syndrome Day💙”

5 year old Evan Daikos just started Kindergarten and LOVES ice cream!

5 year old Evan Daikos just started Kindergarten and LOVES ice cream!

Upcoming DSACF events:

Did you know? #PuppyBowl & #SuperBowl have Central Florida ties

By: @jenvargas

Look, I’ll be honest. I have no interest in football. Aside from team names (maybe), I couldn’t tell you the first thing about the rules, players or locales of this manly activity. BUT! There is one thing I look forward to every year at this time…

Puppy Bowl Sunday!

The Puppy Bowl started on Animal Planet back in 2005, and was a smart idea for more than one reason. First, PUPPIES. Who doesn’t love a cute, cuddly, weeks old puppy?! Second, puppies playing scrimmage – or just puppies playing with each other. Add large water bowls and fluffy tug toys into the mix… it’s cuteness overload. And while all the (very necessary) ruff, ruff, ruffness makes me want to curl up into a cuteness ball on the floor, the third reason is the most important; to find shelter dogs ‘furever’ families and permanent homes. And to also educate families about getting pet insurance. There are many dog insurance providers and we like to show you some of the options.

This year’s Puppy Bowl athletes came from shelter and rescue organizations in Texas, California, Puerto Rico, Virginia, Illinois and right here in Central Florida, via Saint Cloud’s Florida Little Dog Rescue to be exact! Twelve of FLLDR’s cutest represented us in the Puppy Bowl this year and one of them, Cara, was named 2015 BISSELL MVP (Most Valuable Puppy)! She was SO valuable, Cara won MVP twice!!

Also, big shout out to my pal @MeepTheBird! Meep knows EVERYTHING there is to know about Puppy Bowl… and tweets it!

Oh, and that ‘other’ bowl happening involving football? It also has a local connection! Two of them; one you ceremoniously flip and the other you’ll flip over! The Highland Mint, out of Melbourne, crafted this year’s Super Bowl Flip Coin! What you may not have known is, Highland has also minted nearly half of the Super Bowl’s official flip coins since opening their doors in the 1980s. They sell replicas too, for that huge football fan in your life.

 

Our second connection to the Super Bowl is thanks to 12 year old Bobby Sena from Hunter’s Creek Middle School! He submitted this video to the NFL’s Play 60 Super Bowl contest telling them why he deserved to be the 2015 Super Kid.

I have actually started a few clubs at my elementary school and middle school, and some in my community,” Bobby says. “Pretty much why I started those was because I really wanted to make a difference. I really wanted to express my passion which was going outside, playing for sixty minutes and eating healthy as well.” And his efforts don’t stop there. “I really think that being a Super Kid doesn’t just limit you to playing for sixty minutes and eating healthy but also giving as much effort as you can in school, academics as well as being nice to others.” You’ve got a great head on your shoulders, Bobby! Keep doing good by inspiring others!

Oh, and one more thing. Many on Twitter have weighed in on both the Kitty Half-Time Show with Katty Furry and the Super Bowl Half Time show featuring Katy Perry with Lenny Kravitz and Missy Elliott. What’s your take? Tweet us or share your opinions in the comments below. Also, if you HAD to vote, who’s show was better?

Family Fandom Fun at CONjure August 1-3

Only 15 days left until Orlando’s first ever CONjure, a homegrown convention for fans (and families!), by fans! There will be a little something here for everyone!  Go dressed as your favorite character and compete in cosplay contest! Fan Film screenings, panels of all kinds, gaming, photo ops with your favorite stars and more!

If you are free all weekend and like to pitch in to help, read CONjure’s Top 5 Reasons to Volunteer!

 

CONjure 2014

CONjure Brings Celebrity Guests & Three Days of Fan-minded Fun to Orlando

ORLANDO, Fla. – July 15, 2014 – CONjure Florida is a hotel-based fan experience in the cradle of the Universal Studios tourist area. The inaugural event kicks off in Orlando with three full days of con festivities Aug. 13, 2014.

“Our production team has been going to cons for nearly 100 years if you add it all up. But like a lot of con-goers, we felt their recent rise in popularity created overcrowding that made it hard to enjoy what was so great about these events to begin with,” says chief organizer Ron Methvin.  “Interacting with celebrities and other fans, being able to engage and be inspired by the things you care about is what a con’s all about. So we created exactly the type of event we’d want to attend.”

The family-friendly event will hold panels, photo ops and Q&A sessions throughout the three days of the con, to bring fans together with their favorite series actors including those from “Supernatural,” “The Vampire Diaries” and “Phineas and Ferb.”

Featured celebrity guests include:

  • Mark Sheppard of Doctor Who, Firefly, Medium, Supernatural
  • Joel Hodgson, creator and star of “Mystery Science Theater 3000”
  • David “Doc” O’Connell one of SyFy’s new competitors on “Face Off” (and from Orlando)
  • Kelly Hu from Arrow, X-Men 2, The Vampire Diaries, Phineas and Ferb
  • Nicholas Brendon, Buffy the Vampire Slayer, Criminal Minds
  • Dana Snyder, Squidbillies, Adventure Time
  • Chad Rook, making Internet rounds as The Weatherman in the new series “The Flash”
  • Sandeep Parikh of Community, The Guild
  • and many more

Featured events include:

  • My Nerdy Mermaid Party with Dive-in Movie, presented by Girls of the Con
  • A VIP3K ticket to Joel Hodgson’s “Riffing Myself”
  • Concerts by Dalton Cyr and The Ken Spivey Band
  • Geek dating how-to’s, a Whovian Singles event and other activities for friendship and fun
  • Sandeep Parikh’s improv party bus for those aged 21 and up
  • Iron artist and cosplay contests emceed by George Lowe (“Space Ghost”)
  •  “Robots vs. Aliens” charity giving battle to benefit Nemours Children’s Hospital
  • Kid panels that feature cosplay and character creation designed for kids 12 and under
  • More than 5,000 square feet of dedicated gaming space
  • Plus dozens of screenings, quizzes, social stuff, panels, parties, demos and more

 

About CONjure

CONjure is an Orlando-based event that’s about fandom, because it’s produced by fans. Brought to you by the producers of Dream Con, it’s a re-imagining of one of Florida’s most talked-about conventions. While there are plenty of celebrities, CONjure also features gaming, cosplay, special FX, prop building, fan films & fiction and much more. Plus, CONjure is family friendly. Interact with us on social media (Facebook, Twitter and Google+) or visit us at www.CONjureFlorida.com.