News & Events

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NDSC E-News ~ April 2019

NDSC’s Mission Moment

with Executive Director David Tolleson 

Spring has sprung, which means we’re entering the homestretch leading to this year’s NDSC Annual Convention in family-friendly Pittsburgh!  For those of you who have attended before, you know that there’s nothing quite like the NDSC Convention. Nowhere else in the world can you access as many world-class speakers and as much information in person as you can at the NDSC Convention.  Included in your registration are additional free learning opportunities that you can only access this one weekend of the year: the Global Down Syndrome Foundation Research and Medical Roundtable; the LuMInd IDSC Foundation Research Rally; the NDSC Advocacy Training Boot Camp; the Film Festival; Exhibit Hall; and, this year’s inaugural College Fair.

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Advocacy Training Boot Camp – Jawanda and Rachel Mast

My name is Jawanda Mast. Since my daughter Rachel was born with Down syndrome almost 20 years ago, I have been involved in advocating on behalf of individuals with Down syndrome and other disabilities and their families. I have had some remarkable opportunities to tell our story and have seen our story impact change. My daughter Rachel is 19 years old, and in her first semester of college. She is in the Bear POWER program at Missouri State University. She has been doing advocacy since she was a toddler. Recently, I shared with her that we would be a part of the National Down Syndrome Congress Advocacy Training Boot Camp this year. The discussion that followed was kind of funny and also on point.

Jawanda: Rachel, in June we are going to the National Down Syndrome Congress again.
Rachel: Yah. I am so excited to go back to the Youth and Adults conference. I will see my friends and dance. It is so much fun.
Jawanda: We are also attending the Advocacy Training Boot Camp. I am helping coordinate. Do you want to help?
Rachel: Yes! I will wear my pink cowboy boots?
Jawanda: Well, you can wear your pink cowboy boots but why?

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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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Policy & Advocacy Newsline ~ March 26, 2019

NDSC Senior Policy Advisor, Stephanie Smith Lee, Speaks in Trinidad and Tobago for World Down Syndrome Day Conference

NDSC Senior Policy Advisor, Stephanie Smith Lee, spoke in Trinidad and Tobago last week at the UN World Down Syndrome Day Conference. The conference is hosted in part by one of our NDAC Group members, Down Syndrome Family Network.

Stephanie spoke at the U.S. Embassy in Trinidad and Tobago on WDSD to Embassy staff, the media, and non-profit organizations about policy advocacy to create inclusive schools and the lessons learned in the US about how to create truly inclusive schools.  As a featured speaker, she shared her knowledge of the lessons learned in the U.S. about inclusive education and the key role of family and self-advocates in creating positive change. Listen to one of her speeches HERE.

Employment Policy Update

NDSC continues to prioritize employment policy issues for people with Down syndrome and other disabilities. Much of NDSC’s work on employment policy is with the Collaboration to Promote Self-Determination (more info HERE), a coalition of national groups whose mission is to push for major systemic reform of the nation’s disability laws and programs to advance economic security, enhance integrated community participation, and increase opportunities for people with disabilities so that they are able to lead self-determined lives.

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2019 Convention Insider ~ March 22

 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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NDSC E-News ~ March 2019

NDSC’s Mission Moment

with Executive Director David Tolleson 

At the NDSC, serving you and your family is our mission and our privilege.  Since my last “Mission Moment”, we have delivered a Spanish-language workshop for adult siblings in McAllen, Texas; an Educators Conference in Nashville, Tennessee; two free webinars – one on transition by the Children’s Hospital of Philadelphia’s Alyssa Siegel, MD, and another hosted by NDSC staff designed to help prepare attendees for the upcoming registration; and, we attended the Down Syndrome Affiliates in Action Conference in St. Louis, where NDSC Policy Director Heather Sachs provided a policy crash course and where we shared free information and materials with affiliate leaders. This weekend, we’re bringing our latest Down Syndrome Summit to Fort Wayne, Indiana, covering topics including inclusion, advocacy, behavior, health & medical, adult sibling issues, and special needs law.

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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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Policy & Advocacy Newsline ~ February 21, 2019

Transformation to Competitive Employment Act

NDSC is proud to be one of the organizations leading the effort to pass the Transformation to Competitive Employment Act (H.R. 873/S.260). Recently introduced in the Senate by Senators Bob Casey (D-PA) and Chris Van Hollen (D-MD) and in the House by Chairman Bobby Scott (D-VA) and Representative Cathy McMorris Rodgers (R-WA), this bipartisan legislation will address barriers to employment and expand opportunities for competitive integrated employment for people with disabilities while phasing out subminimum wage certificates under Section 14(c) of the Fair Labor Standards Act over a six-year period.

While other bills have sought to phase out Section 14(c), this bill is unique in that it also includes a systematic approach to expand capacity for competitive integrated employment, particularly for people transitioning out of sheltered workshops. The grants provided under this bill would provide technical assistance and funding to help states and 14(c) certificate holders move to a paradigm of more integrated and innovative approaches to disability employment.

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