NDSC E-News ~ September 2019
Mission Moment
With NDSC Executive Director, David Tolleson
Recently, our staff traveled to New Orleans to begin preparations for next year’s NDSC Convention, June 25-28. Hosted in one of America’s most unique locations, this year’s event looks to be one of our most memorable “family reunions” with a New Orleans second line parade; free admission to The Aquarium of the Americas, Audubon Zoo, and the Insectarium for all children ages 2-12, with half-price admission for guests age 13 and over; and, free admission to New Orleans City Park and Storyland Theme Park, with unlimited ride wristbands for the first 3,000 guests!
Not far from our hotel, you’ll find the National World War II Museum, the new Children’s Museum, the Jazz Museum, the famous French Quarter, and the beautiful Garden District. Beyond New Orleans, you’ll find many unique and historical reminders of Louisiana’s Creole and Cajun communities. And, “The Big Easy” is well-known for its music and food, with pralines, beignets, shrimp creole and crawfish etouffee among the many culinary delights you will find there.
Of course, the best part about traveling to the 2020 NDSC Convention is what happens inside the hotel! Nowhere else in the world will you find such a broad scope of expertise and resources, from newborn to adult topics, and including the latest updates on election year policy issues and medical and research breakthroughs. The dances – including this year’s “Boogie & Beads 321 Dance” – are always a hit. But, nothing is better than the friendships that are made and renewed when we bring together several thousand of our closest friends from around the world.
I hope you’ll make plans now to join us next June in New Orleans – it wouldn’t be the same without you.
Laissez le bon temps rouler!
Down Syndrome Awareness Month is right around the corner. This year you can show your support by adding the NDSC frame to your Facebook profile picture (look for the announcement and directions on the NDSC Facebook page on September 30th) or by getting involved in the easy, grassroots fundraising and awareness opportunities that support NDSC advocacy, programs, and resources while promoting Down syndrome awareness.
The NDSC Online Challenge engages participants in raising funds and awareness online. Participants who use the Facebook Fundraising platform and raise $321 will be awarded some really cool prizes for their efforts. We are challenging YOU to help raise awareness and funds to support the projects and programs of the NDSC such as the Rural Outreach and the Educator Conference. If you need help getting your Facebook fundraiser started just email NDSC Engagement Director, Rhonda Rice, at rhonda@ndsccenter.org.
NDSC is proud to have partnered with nearly 1000 Kroger stores nationwide. You can raise money to support the work of NDSC when you link your Kroger Plus card in the Kroger Community Rewards® program. It’s easy to enroll in Kroger Community Rewards®. To get started, sign up with your Plus Card at www.KrogerCommunityRewards.com and enter National Down Syndrome Congress as the organization you wish to support. It’s that simple! Once enrolled, you’ll earn rewards for the NDSC every time you shop and use your Plus Card.
#AreYouAware
Use the hashtag #AreYouAware in your social media posts in October to and help Educate, Advocate, Empower, and Inspire others during Down Syndrome Awareness Month. Do you have something that you want people to be aware of during Down Syndrome Awareness Month; a Self-advocate owned business, something unique or an accomplishment of a special Self-advocate in your life, let us know so we can share! Email your #AreYouAware information to ndsc@ndsccenter.org.
On The Road Again – Bringing NDSC to You!
Thank you DSDN – We Loved Rockin’ With You
NDSC staff members exhibited at the Down Syndrome Diagnosis Network 2019 Rockin’ Mom Retreat that took place at the Gaylord Opryland Resort in Nashville, Tennessee on September 6-7. The retreat is one that is planned annually for moms-only and focuses on supporting moms with young children, with Down syndrome, although there is something relevant regardless of the age or stage of their child with Down syndrome. The DSDN Rockin’ Moms Retreat will be held in Denver in 2020.
Nebraska One Day Summit
Saturday, September 21st, NDSC traveled to Kearney, NE for the NDSC Central Nebraska Down Syndrome Summit. The summit is part of the ongoing programming of the NDSC Center for Outreach & Education and hosted speakers from across the country who shared their expertise on topics such as building and implementing IEPs for success, behavior, meaningful inclusion, potty training, and technology, with an Ask the Doctor and medical update session as well as a Self-advocate keynote to open the day.
For information about holding an NDSC Down Syndrome Summit near you contact NDSC Programs and Partnerships Director, Tamara Pursley, at tamara@ndsccenter.org.
We are delighted to offer an important FREE parent webinar with Dr. Jesus Florez entitled “Sobre la salud de nuestros hijos”. The webinar will be held Saturday, September 28th from 10:00 AM – 11:30 AM EST. This webinar will be presented in Spanish. If you cannot attend, you may still sign up to receive the recording.
Estamos encantados de ofrecer un importante seminario web GRATUITO para padres con el Dr. Jesús Florez titulado “Sobre la salud de nuestros hijos”. El seminario web se llevará a cabo el sábado 28 de septiembre de 10:00 a.m. a 11:30 a.m. EST. Este seminario web se presentará en español. Si no puede asistir, aún puede inscribirse para recibir la grabación.
The Georgia Down Syndrome Consortium, of which the NDSC is a founding organization, is holding a one-day Learning Summit designed to meet the needs of parents, siblings, families, and caregivers of individuals with Down syndrome across the lifespan.
The event will take place Saturday, October 19th, at Kennesaw State University’s Academy for Inclusive Learning and Social Growth.
The NDSC Policy Team will be hosting an event with the American University Washington College of Law on Monday, November 4, 2019, from 5:30 PM – 8:00 PM. The event, entitled, “It’s Never Too Early to Prepare: A Discussion of Pathways to Workforce Readiness and Employment”, will discuss laws and policies that successfully prepare students for the transition to competitive integrated employment from early school age through adulthood. Speakers will also review the current state of disability employment policy and proposed future changes. It will contain panels of policy experts as well as self-advocates who will discuss their work experiences. The cost to attend is $21 per person, which includes heavy appetizers and a cash bar. If you’re going to be in the Washington D.C. area on November 4, we would love to see you there!
Research Opportunities
Your involvement is requested to provide information that will be extremely valuable to healthcare professionals involved in distributing information and resources and those involved in the care of individuals with Down syndrome and their families.
The aim of this Genetic Counseling Master’s Thesis Project is to assess the perspectives of genetic counselors and parents and to reevaluate the informational needs of parents receiving a diagnosis of Down syndrome in their child.
Participation involves completing an online survey. The online survey will be available until December 30th, 2019 at midnight, and it will be made available through Qualtrics. The survey will take approximately 15-20 minutes to complete.
