My Advocacy Journey…and My Mission to Help You on Yours

Heather Sachs, NDSC Policy & Advocacy Director

Thirteen years ago, my husband and I were given the news that so many of you have also heard – your baby has Down syndrome. Ours was a delivery room diagnosis (and unfortunately not delivered in a sensitive way), and we were left in complete shock and confusion. We were expecting a healthy baby girl and didn’t even really know what Down syndrome was, and our lives were suddenly placed on a completely unanticipated and unclear path.

Heather and daugther with DS

With the support of national organizations like NDSC and our local Down syndrome group, we began to adjust to our new reality. We plunged into the world of heart surgery, early intervention, private therapies and we started learning about the potential personal and systemic challenges that our daughter could face.

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Convention Insider ~ May 1, 2019

NDSC Wants to See You in Pittsburgh!

 Blonde girl w pink top

It’s been nearly 20 years since the NDSC convention last met in Pittsburgh, Pennsylvania and we can’t wait to come back! If you are planning to attend the convention June 27-30 the time to register is now! Best Value Pricing ends May 17th and we have limited space left in Kids’ Camp, Youth & Adults Conference, and Brothers & Sisters Conference.  If you are still trying to decide if you will be attending this year’s convention check out the amazing workshop schedule or the exclusive specialty tracks we have planned. The convention is not just about learning, it’s about celebrating too. We have two awesome dances planned and many networking opportunities for families to meet and interact. To see a glimpse of what the NDSC Convention is about, you can watch a short convention video then make plans to be a part of what many call a “life-changing” weekend. Register Now!

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NDSC Noticias – Abril 2019

Convención Del NDSC

Cada año, miles de personas de todo el mundo  asisten a la Convención anual de síndrome de Down. La mayoría van para escuchar la información más reciente de expertos de renombre mundial. Para otros, son unas increíbles vacaciones. Sin embargo, para casi todos, es la sensación única de la gran reunión familiar del NDSC que contagia el fin de semana de la convención.

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Policy & Advocacy Newsline ~ April 23, 2019

Transformation to Competitive Employment Act

NDSC continues to advocate for the passage of the Transformation to Competitive Employment Act (H.R. 873/S.260) and we need YOUR help! 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. View a two-pager about this bill on the Collaboration to Promote Self-Determination website.

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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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Boletín ~ Convención

La inscripción para la 47ª Convención Anual

NDSC se abrirá el 25 de marzo

¡Anunciando los talleres de la conferencia

general en español!

La Dieta del Síndrome de Down: Cambiando el ‘Trayecto’ a través de Nutrición, Jennifer Kimes

Descubrá como eliminar y reducir sintomatologia de varios problemas de salud y desarrollo  que afectan a niños y adultos con SD incluyendo autismo, ADD, diabetes, hipotiroidismo y demencia de Alzheimer. Se  presentará una revisión de literatura implicando la dieta alta en azúcar y carbohidratos con muchas de las disfunciones gastrointestinales, neurológicas, endocrinas e imunitarias asociadas con SD. Un syntesis de la investigación hecha sobre las intervenciones dieteticas seran discutidas y se repasaran recomendaciones de varios proveedores de salud para ver como cambiar el trayecto de la disminución  de las perspectivas para las epidemias de salud que afectan a las personas con SD.

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