2019 Convention Insider ~ April 17

Pittsburgh Convention Center

Register for Pittsburgh Convention Today!

If you haven’t registered yet, there is still time to take advantage of best value pricing and be part of what some call a “life-changing” experience. Limited space is available in all programs including Youth & Adult, Brothers & Sisters, and Kids’ Camp. Still not sure if the convention is right for you and your family? Check out the amazing workshop schedule or the exclusive specialty tracks we are planning just for you. If you have completed your registration and you want to add a pre-conference session, Evening of Champions tickets, 2019 convention t-shirts, or would like to purchase workshop recordings, call the NDSC office at (800) 232-6372- we will be happy to assist you.

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2019 Convention Insider ~ March 28

Gorgeous and Spacious Omni William Penn Hotel – Still Available

The Omni William Penn Hotel is a premier Pittsburgh hotel and a member of Historic Hotels Worldwide, which is dedicated to promoting heritage and cultural travel to prestigious historic treasures.  Registration for the NDSC 47th Annual Convention just opened this week and many families are excited about being in Pittsburgh this June 27th – 30th for the one-of-a-kind NDSC “giant family reunion” and to discover all that Pittsburgh has to offer.  Recently named one of the “Best Places to Travel”, Pittsburgh offers award-winning restaurants, outstanding family attractions, and a vibrant downtown rich in history.

We are thrilled to have arranged a special rate at the historic Omni William Penn Hotel for convention attendees.  If you have not yet made reservations for your stay in Pittsburgh, you will want to check out the Omni William Penn Hotel and register via the link provided upon completion of your NDSC Convention registration. This historic hotel, just a short 2 block walk from the convention center, has spacious rooms available at the discounted convention rate of $159 per night and a shuttle that will run between the hotel and the convention center during all convention hours.  Book your accommodations soon, as our room block is filling quickly.

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2019 Convention Insider ~ March 11

 Registration Opens on March 25!  Are you Ready?

Important Information Before You Register 

As the opening of registration approaches, we hope that you will take a few minutes to familiarize yourself with the registration system.  We have prepared a video tutorial and a list of registration tips to help you have a great registration experience!

Pre-Conference Sessions

Attending a Pre-Conference session gives you the chance to spend four hours digging deep into one specific topic. The nine session choices, presented by nationally known speakers, are structured to include content that is research-based, shares best practices, and provides proven “how to” strategies. All sessions will include time for Q & A. Pre-Conference sessions require an additional charge during registration.

Pre-Conference Spotlight – Building Bridges: A Holistic Approach to Transition

A multidisciplinary team of experts from the key areas of transition including decision-making, financial planning, employment, independent living, and healthcare will facilitate this workshop. Speakers will also discuss advocating for real opportunities in employment and post-secondary education during IEP meetings and meetings with Vocational Rehabilitation and support services.  We hope this session will provide the audience with guidance on navigating the transition process and developing an individualized plan to adulthood for your adolescent with Down syndrome. 

For detailed information about all of our Pre-conference sessions:

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2019 Convention Insider ~ March 11

Registration Opens in 2 Weeks! Are you Ready?

NDSC Convention 101: A Road Map to Navigating a Successful Convention Experience

Join us tomorrow, March 12th, at 1:00 p.m. EDT, for a one-hour overview of the NDSC Convention before registration opens March 25th. Learn about the registration system, conference options for the entire family, and social and networking events so that you will be ready to register with confidence!

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NDSC Convention News ~ April 4, 2018

We feel the excitement building as April 16th approaches and families can finally register for the 2018 NDSC Annual Convention.  We also know there is eagerness to make hotel reservations. As was the case last year, convention registration is required before families can reserve their rooms.  We strongly recommend reading over this registration tips sheet NOW, so that on April 16th you are informed and prepared to complete your family’s registration. We also encourage you to watch this online tutorial about the registration process.

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NDSC Convention News ~ May 3, 2017


Please Read Before You Register – Registration Opens on April 10!

Attending an NDSC Convention for the First Time

“NDSC has given us the chance to grow and learn so we can be the best parents we can be for all of our daughters.” 

My name is Macy Johnson. I’m a 40-year-old stay-at-home mom. My husband, Mark, is also 40 and is currently a Master Sergeant in the U.S. Air Force. We have three beautiful little girls. Kaylee (9), Kelsey (4), and Kenzie (2). Kenzie has Down syndrome. We love to spend time outdoors playing together and taking care of our rabbits, chickens, and a small garden. Kenzie’s favorite things to do are swing with her sisters and pet the bunnies! Johnson 1

Kenzie is pretty much like any other 2-year-old. She’s sweet, smart, and silly. She loves for us to sing songs and read books to her. Pulling her sisters’ hair and stealing their Barbie dolls is always fun for her, and ice cream is her favorite snack. Kenzie has changed my perspective and how I look at Down syndrome, and I hope by sharing her story, I can positively influence others as well. It’s also helped me realize what’s truly important in life: family, friends, health, and happiness. Oh, and ice cream! Kenzie won’t let us forget about ice cream!

I first heard about the National Down Syndrome Congress through a Google search I did after we first received Kenzie’s diagnosis. I admit I Googled a lot more back then than I should have, but I’m so thankful I found the NDSC website. There’s a wealth of information, no matter what stage you’re at on your journey, but it’s especially great for new parents. There I learned about the annual NDSC Convention. One of our local support groups, the Middle Georgia Down Syndrome Society, gave our family (along with 5 other families!) a scholarship to help us attend this year’s convention in Orlando. My husband and our three daughters were also able to attend; it was our very first time at the convention!

What surprised me the most about the NDSC Convention was the amount of workshops available to attendees. There were so many different sessions on topics ranging from babies all the way through adulthood. NDSC did a great job organizing so many different sessions into such a short amount of time. I only wish I could have attended more! What was no surprise at all was how nice and welcoming everyone was at the convention. Everywhere we went there were smiles, hellos and hugs. I had lots of favorite moments, but the best for me was seeing the self-advocates speak at the plenary sessions. Whether they were introducing another guest speaker or sharing their story, I was really proud and inspired by all of them.

We are looking forward to next year’s convention in Sacramento and we hope to attend.  I can’t wait to reunite with friends I met this year, meet new ones, and attend new workshops. The chance to visit California is an added bonus! If you have the chance to attend, by all means get there! Our experience this year was the most memorable Down syndrome related event we’ve ever attended. It was informative, fun and inspiring! NDSC has given us the chance to grow and learn so we can be the best parents we can be for all of our daughters. I hope this year’s convention is only the beginning of many more convention trips for our family.

My husband and I will soon be starting our own nonprofit organization, Kenzie’s Chromosome Crusaders.  We will be providing families who’ve been given a diagnosis of Down syndrome with information packets and gift baskets at the time of birth.  We are happy to help any family find the information they need or make local connections for support. We hope to inspire and encourage others as they begin their journey with Down syndrome. You can follow us on Facebook at Kenzie’s Chromosome Crusaders.

Growing Up NDSC: The Kaser Family

“Each year the convention seems to get better and better.  We come away feeling refreshed and energized. Getting ideas and confirmation that things are going to be ok!”

Larry and Karen Kaser welcomed their daughter Kelly to the world in May of 1984. It was shortly thereafter, a family friend introduced them to NDSC. It wasn’t long before Larry and Karen were involved in helping to form their local Down syndrome support group, The Down Syndrome Support Association of Central Indiana, and later, the Dallas Guild in 1985. “Prior to the internet, Larry and I relied on our local parent group, the NDSC office, and the convention as our sources of information in raising Kelly,” shared Karen.

Kaser 4Since the year Kelly was born, the Kasers have attended almost 30 NDSC Conventions. Early on in their journey with Down syndrome, Larry and Karen admit to being overwhelmed, in a positive way, by the amount of valuable information shared at the convention and the wonderful parents they met. Over the years, though, those acquaintances have become like family for the Kasers. “The opportunity of meeting up with old friends and making new acquaintances is fantastic! The convention is now like a very large family reunion for us. Larry and I also look forward to meeting up with our friends and just a time to be able to educate ourselves.”

There is so much to look forward to at the convention, not only for the parents, but the self-advocates too. “Kelly looks forward every year to attending the Youth and Adult program, including workshops, dancing, meeting friends, socializing, and of course, the talent show!” For Larry and Karen, they also look at the convention as a way to share their journey with new parents. “We enjoy sharing information about Kelly’s life and learning about other families’ life experiences too. Larry and I feel we are never too old to learn something new,” said Karen.

The Kaser family, in a sense, has grown up NDSC. In addition to attending the annual convention, both Larry and Karen have served on the board of directors. “Over the years, we helped with NDSC fundraisers, Mom’s Only sharing sessions, Father’s Only sharing sessions, the First Time Attendees Workshop, as well as the Brothers and Sisters, Youth and Adult, and Affiliate workshops,” they recalled. Kelly’s siblings and relatives have also been impacted. “Our extended family has benefited by us being active in NDSC,” said Larry. “Our older children have received information from participating in the Brothers and Sisters program.  In fact, our daughter Kim founded a Brothers and Sisters group in Indiana.” Kaser 2

Now 32, Kelly is “a very caring young lady who enjoys making new friends and sharing with her community.” Kelly loves spending time with her family and friends. She currently works as a hostess at Scotty’s Brewhouse, after spending 10 years with Starbucks. When she is not working, Kelly enjoys volunteering in her community, karaoke, athletics (cycling, yoga, muscle up, Zumba, and cardio dance), bowling and flowriding. She also participates in a performance group called the Roundabout Playback Troupe and attends events at the White River Christian Church and Easter Seals Crossroads. “Kelly loves seeing old friends and making new ones,” shared Karen and Larry.

When the Kasers were asked if there was anything additional they wanted to share for this blog post, they added, “Having been involved with NDSC for so many years, we have seen it grow into a wonderful FAMILY organization! We thank the NDSC office for organizing the convention so families can get together each and every year!”
Kaser 3

Don’t worry if you aren’t attending this year’s convention in Orlando. There’s always another one next year! We hope to see you soon at one of our Giant Family Reunions!