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Welcome to the DSAIA Blog!

Feel free to view past blog posts. To comment on any post, please subscribe. 

DSAIA welcomes guest bloggers.  Have something to share that will benefit the local/regional Down syndrome organization? Contact us today at info@dsaia.org! 

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  • Thu, March 12, 2020 3:33 PM | Anonymous member (Administrator)

    Two weeks ago today we held our conference and annual meeting in Orlando, Florida and it was an amazing event with about 250 people in attendance. Wow.

    I wanted to share the same message with you that I shared with everyone in person on Friday, Feb. 28 at the annual gathering:

    "There are several people that DSAIA wants to thank- first and foremost our members. We understand that taking time away from your family and organizations is difficult, but we know you will receive a lot of valuable information out of this weekend. We were founded on the principles of creating a community for Down syndrome organizations and facilitating best practices. We are mission-driven and our mission is to serve your needs to the best of our ability.

    There are also two special people that we would like to thank- Deanna Tharpe for her leadership and commitment for many years and her dedication to DSAIA and Amy Van Bergen, who has carried the torch over the past several months. As one of the founding board members of DSAIA and her long-time role as the executive director of the Central Florida affiliate, Amy’s expertise and passion for this community continued to be realized when she assumed this interim position.

    Building on the foundation that Deanna laid over the years, and Amy continued, we are excited about the future of our organization. As Amy steps out of her interim role, we are excited to launch a search for an Executive Director. The projected start date will be Spring of 2020. More details on the job search will be released in the next couple of weeks."

    To that end, we have extended Amy's interim contract for an additional 90 days and we recently posted the job description for the DSAIA executive director. We hope you will help us to share it widely with any qualified candidates.

    With my appreciation,

    Lauren Camp Gates, Board President


    DSAIA Executive Director Job Description & Details Here

  • Thu, March 12, 2020 2:41 PM | Anonymous member (Administrator)

    Update on 4/6/2020 with "Q & A on COVID-19 and Down syndrome" now available in Spanish:

    Link here for Spanish version of Q & A

    Update on 3/27/2020 with "Q&A on COVID-19 and Down Syndrome."

    This easy-to-read documents were created jointly by organizers: DSMIG-USA, Global Down Syndrome Foundation, LuMind IDSC, National Down Syndrome Congress, National Down Syndrome Society and the National Task Group on Intellectual Disabilities and Dementia Practices. Supporting organizations included: Down Syndrome Affiliates in Action, Gigi's Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation and T21 Research Society.

    The long version of the Q & A is available here. 

    The abbreviated version of the Q and A is available here.

    *****

    Update on 3/18 with nonprofit/marketing: resources

    Register for  Ok....What Do We Do Now? on Mar 20, 2020 1:00 PM EDT at with educator, behavior analyst and inclusion expert Stacy Taylor HERE.

    Please note the recording will only be available for 48 hours.

    ****

    Update 3/16 of free online resources for nonprofit orgs and the families they serve here:

    Tuesday, 3/17 from National Down Syndrome Congress: 

    WEBINAR recording from NDSC:

    Preparing Yourself, Your Family and Your Home for Online Learning

    Join the NDSC for a webinar to assist in adjusting to online learning in the home setting. Sean J. Smith, professor of Special Education at the University of Kansas and NDSC board member, will help you prepare your home environment and help you find balance during this shift to a new normal. This is the first in a series of webinars which will also include instructional supports, technology, and online curriculum tips.

    Wednesday, 3/18 from CharityHowTo:

    WEBINAR-March 18, 3 PM EST

    Coronavirus and What You Need to Know About Postponing and Cancelling Events

    Register here.

    WEBINAR - March 24, 12 noon EST

    FUNctional Fine Motor Fun: At-home activities with your child with Down syndrome

    Join DSAIA and occupational therapist Jen Goldman as she presents ideas for children with Down syndome of all ages for practical, at-home activities to maintain and strengthen fine-motor skills.

    Register here.

    *******

    Today, on March 12, 2020, we shared some information and resources on "Leadership Planning Around Coronavirus." If you missed the newsletter issue or want to revisit that information, it is available here.

    We will continue to provide updates and resources here as resources and recommendations for our community are developed. 

    We invite you to share your communications, messaging and other thoughts for your fellow leaders of local Down syndrome support organization on our facebook page or group here as situations continue to evolve.

    As with any communications plans, the PR experts* recommend 5 keys to effective communications:

    1. Practice empathy, transparency and being responsive.
    2. Have an escalation plan.
    3. Prioritize stakeholders.
    4. Depend on experts.
    5. Seek help from professionals.

    *These five tips come from Peter Lamotte, Senior Vice President, Chernoff Newman, a marketing and communications firm based in Columbia, South Carolina.

    3/12/2020 at 4:30pm EST UPDATE: Global Down Syndrome Foundation released this statement and recommendations related to COVID-19 and defining "high risk" as it relates to patients with Down syndrome.

  • Fri, February 07, 2020 4:13 PM | Anonymous member (Administrator)

    For our exhibitors and sponsors shipping materials to #DSAIA2020, here is all you need to know before you go!

    ROSEN PLAZA GUEST PACKAGE RATE SHEET

    Inbound Packages

    Inbound Shipments:  The Hotel’s Package Room, maintained by the Bell Captain, is available for the receipt, holding and delivery of small packages to the guests in its sleeping rooms and meeting spaces.  All inbound packages will be weighed upon arrival and handling charges will be assessed to the guest’s room or Master Account when they are delivered.  The Package Room is not available to store exhibits, pallets or large crates. All packages must be pre-approved for delivery by the Convention Services Manager.  Due to limited storage, no shipment will be accepted earlier than five (5) days prior to the date required

    INCOMING HANDLING CHARGES

    Box under 50 lbs                                   $10.00 per box

    Box over 50 lbs                                     $10.00 for first 50 pounds plus $.60 per each

                                                                Additional pound

    PALLET CHARGES

                200 lbs and less                                    $100.00

                201 lbs to 400 lbs                                  $150.00

                401 lbs and more                                   $200.00

    STORAGE CHARGES

    •             Under 3 days                                         Complimentary
    • Over 3 days:     Box                              $5.00 per day
    •                            Pallet                            $50.00 per day

    INTERNAL MOVING CHARGES

    •             Box                                                      $5.00 each
    •             Pallet                                                    $50.00 each

    Outbound Shipments:  RICOH, the hotel’s on-site business center, handles all outbound shipments.  Charges can be applied to the guest rooms or Master Account.

    SHIPPING ADDRESS:              The Rosen PLAZA Hotel

                                        9700 International Drive

                                        Orlando, FL  32819

                                                    Attn: (YOUR NAME ON HOTEL REGISTRATION) 

    Arrival Date :  (YOUR CHECK-IN DATE AT HOTEL)   


    Complete contact for the hotel site if you need additional information is:     

    9700 International Drive * Orlando, FL 32819-8114

    tel 407.996.9700 * fax 407.996.9111

    www.rosenplaza.com

          


  • Fri, January 17, 2020 8:03 AM | Anonymous member (Administrator)


    Ashley Edwards, our guest blogger for every day this week of Jan. 13, 2020, is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    This is MY FAVORITE THING TO TALK ABOUT. Like, ever! I love, love, love Orlando, and one of my very things about living here is our rapidly growing—and thriving—food scene. So maybe you don’t have the time, energy, or money to eat your way through Orlando. I’m not even sure that’s possible; there are tons of amazing food options. I would say within the past decade we’ve really seen a boom in our local food scene. Everything from food trucks to farm-to-table concepts to taco joints. And I’m not hating any of it.

    Like I mentioned, there are so many places to grab great food here in Central Florida, but some worth noting (and some personal favorites) during a short visit are:

    Cuban:

    §  Black Bean Deli

    Healthy:

    §  Dandelion Community Café

    §  Hummus House

    §  Season’s 52

    <insert image of Hummus House>

    Pizza:

    §  Lazy Moon Pizza

    §  Pizza Bruno

    §  Prato

    <insert image of Lazy Moon>

    Sushi:

    §  Amura

    §  Seito Sushi

    §  Shin

    Tacos:

    §  Black Rooster Taqueria

    §  Reyes Mezcaleria

    §  Tako Cheena

    §  Tin & Taco


  • Thu, January 16, 2020 1:03 PM | Anonymous member (Administrator)


    Guest Blogger Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    #Thirsty Thursday has always been one of my favorite themes in the Social Media world. And there’s no shortage of delicious places to whet your whistle. If beer is your thing Orlando has a thriving local brewery scene. Almost too many to choose from, actually. So here are some of my favorites for you to check out: Ivanhoe Park Brewing Company, Ten 10 Brewing Company, and Orlando Brewing. There are also some craft cocktail bars peppered throughout the Central Florida area with charming atmospheres and tasty drinks. The Courtesyin downtown Orlando, Pharmacy in the Dr. Phillips area, and Tori Tori in the Mills 50 District are some gems worth checking out. But if adult beverages aren’t your things, I totally get it. There are a lot of coffee shops and tea joints around town: Infusion Tea, ROYALTEA.

  • Wed, January 15, 2020 11:48 AM | Anonymous member (Administrator)

    It is final call if you are interested in meeting and speaking with the top decisionmakers of local and national Down syndrome organizations from all across the nation. 

    Single tables are only $350. Click here for further details:

    2020 DSAIA Conference Sponsorship Brochure FINAL.pdf


  • Wed, January 15, 2020 11:28 AM | Anonymous member (Administrator)


    Guest Blogger Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.


    Is shopping your thing? Well, then – shop till you drop! Central Florida has some great shopping in the way malls (The Mall at Millenia, The Florida Mall) as well as the outlet stores we’re notorious for. But aside from that there are some fantastic local stores, but new and vintage. A few of my favorites are Freehand Goods (in both East End Market as well as the Hourglass District), Adjectives Market in Winter Park Village, and Avalon Exchangewhich is a really nice, higher-end thrift store located near Rollins College in Winter Park.


  • Tue, January 14, 2020 10:42 AM | Anonymous member (Administrator)

    Today's guest blog post comes from Ashley Edwards. Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.


    Obviously Orlando is known all over the world for first-class theme parks: Walt Disney World, Universal Orlando Resort, and SeaWorld Orlando to name a few (there are a handful of others, did ya know?). But where we think we truly shine is some of the local activities we have to offer residents and out-of-towners alike. If you could only pick a few we’d most definitely recommend:

    • (Harry P.) Leu Gardens. “Leu Gardens” as we residents refer to it, it really quite an amazing treasure. Located in one of our beautiful neighborhoods called Audubon Park, the gardens are breeding ground for stunning flowers and trees, exhibits throughout the year, and monthly “movies in the gardens.” It truly is something to see.

    • A stroll around Park Avenue in Winter Park. “The Avenue” is a must-see for any visitor, packed with shopping, restaurants, coffee shops and bookstores. One of my favorites is a spice store on the north end of the street called The Spice & Tea Exchange – you can find amazing flavors to spruce up your own food, and countless kinds of teas.

    • Explore Mead Botanical Garden. Mead Garden is most definitely a little treasure of ours here in Central Florida. In fact, it’s tucked away in a quaint little neighborhood just on the south tip of Winter Park. In addition to encountering seasonal flowers and plants, there are walking trails to explore the surrounding area, and outdoor pavilions equipped with grills just yearning to be used for a picnic. 

    Visit the Orlando Museum of Art. The Orlando Museum is something real special. As with any similar museum there are circulating exhibits, but there’s always something interesting and thought-provoking to view. It’s also a gorgeous space inviting in lots of nature lighting, and the gift shop is pretty special!


  • Mon, January 13, 2020 8:27 AM | Anonymous member (Administrator)

    This week's guest blogger is Ashley Edwards. Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    You want to see the “real” Orlando, don’t you? If you have any amount of spare time and want to get to know #TheCityBeautiful the way those who call it home do, one of the first places you want to head is to downtown Orlando and take a stroll around Lake Eola. It’s iconic to Central Florida, and has become one of the most recognizable landmarks to the area. With a gigantic fountain at the center, Lake Eola is not only at the epicenter of the downtown area but hosts families of famous swans (well, famous in the sense they have their very own Instagram), nearby eateries like World of Beer, and a stunning, recently refurbished little Inn. There are also great restaurants and bars a couple of blocks in any direction – Thornton Park is worth a visit.


    If you really want to tap into what’s going on in “local life” during your visit, check out Orlando Bungalower, Orlando Weekly, Pulptown, and Pulse of Central Florida.


  • Mon, January 06, 2020 2:56 PM | Anonymous member (Administrator)

    This guest blog was written by DSAIA board member Brandy Snow.

    Imagine you’re headed down a path. A path to an extremely desirable end. You’ve been told that where you’re going there are people with values like love, strength, perseverance, comradeship, care, and hope. It sounds much like what you imagine heaven to be. So you take an inventory of what you might need along the trip, you pack, and set off on your journey. You feel feelings like anxiety and nervousness in conjunction with excitement and hope. Maybe you’ve done this before and when you got there it wasn’t at all what you thought it would be. Disappointment at best. Pain and hurt at worst.

    As you move down the path filled with exposed roots and steep climbs and otherwise difficult terrain. You doubt your ability to finish. You question your decision. You wonder if it’s going to be worth it.

    Then, just when you think about turning around, your “Navi Fairy” appears.

    For folks that aren’t familiar, the “Navi Fairy” is Link from Legend of Zelda’s journey guide. She isn’t always present, but she appears when summoned and pops up when she sees a need or Link is in trouble. She’s there to guide him in his effort to save Hyrule, a beautiful, lush, albeit fictional, land.

    Yes, I’ve played a lot of video games, as do my two boys, obviously, but hear me out. 

    I imagine DSAIA to play a role a similar to that of Link’s Navi Fairy. A team of  helpful, experienced leaders in the Down syndrome community that provide guidance and direction as well as opportunities for collaboration and shared labor. An invaluable source of resources and tools to get the job done.

    DSAIA has been more than resources and information, though. They have brought together likeminded professionals, cultivated partnerships, and procured an environment inspiring societal change. Personally, because of DSAIA, I have met and become friends with people I would not have otherwise had the pleasure of knowing, let alone been inspired by. They help us all move along this journey to that most desirable, welcoming, and inclusive end. 

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I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio

About DSAIA

Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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7200 E. Hampden Ave. Suite 301  Denver, CO 80224


Phone
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E-mail
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