NDSC E-News ~ November 2018

NDSC’s Mission Moment – November is the Time to Give Thanks

with Executive Director David Tolleson

As Thanksgiving 2018 approaches, I find myself reflecting on the past year and the people that I am thankful for in my role as the NDSC’s Executive Director.I am thankful for those who have committed themselves to advancing our mission to provide information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.  We are truly blessed to have such a large network of people focused on executing our vision of a world with equal rights and opportunities for people with Down syndrome.

I am thankful for our member families – you are the heart of the NDSC.  You continue to inspire us to be better and give our work purpose.  Without you, the NDSC simply would not exist.

I am thankful for the donors and sponsors who make our work possible.  Without your financial support, we could not continue to provide information, resources, programs, or the experience of the Annual Convention, for individuals with Down syndrome and their families.

I am thankful for our affiliate partners who are proof that “many hands make light work”.  When the NDSC and local organizations present a united front, we ensure that families receive the best support, education, information, and resources in their communities.  I look forward to 2019 as we work with affiliates to build our recently launched Rural Outreach Program. These one-day conferences provide a full range of resources and services to communities that so desperately need them.

I am thankful for those who serve on our boards and advisory councils, giving their time, talents, expertise, and passion to the NDSC, never asking for anything in return.  I’m also grateful for the hundreds of volunteers who support our special projects and events, including the NDSC Annual Convention.

Finally, I am thankful for those who proudly wear the badge of NDSC Staff.  These caring professionals have committed themselves to a life of service to our community.  It is an honor to serve alongside them.

I hope you have a wonderful season of joy and thanksgiving with those you love most.

Wishing you and yours peace and happiness.

 NDSC Outreach and Education

The launch of The National Down Syndrome Congress Center for Outreach & Education is the NDSC’s largest initiative since the birth of our Annual Convention. Our new Rural Outreach program partners the NDSC with organizations across the country to provide outreach to underserved rural, tribal, and urban communities. These conferences are offered in both English and Spanish.

Along with our affiliates in West Michigan and Bakersfield, CA, we have already provided one-day summits for nearly 300 families who may not otherwise receive much-needed services. If you are interested in co-hosting an NDSC Outreach Summit in your area contact NDSC Programs and Partnerships Director, Tamara Pursley, at Tamara@NDSCcenter.org or call 770-604-9500.

Inaugural Educator Conference on the Road

Join the National Down Syndrome Congress and the Down  Syndrome Association of Middle Tennessee, December 1, as we host the first ever Educator Conference on the road.This workshop, led by world-renowned speakers, will engage educators, working to enhance outcomes for their students with Down syndrome and other intellectual disabilities, as well as autism, in identifying and implementing strategies applicable to classrooms from kindergarten through 8th grade. Discussions will include ways to further include students in the general education classroom through effective literacy interventions, differentiated curriculum, technology, and behavioral practices.
For more information go to NDSC Educator Conference

NDSC Outreach Has No Borders

Although we are the National Down Syndrome Congress, our reach goes well beyond the borders of the United States.  We receive calls at the National Center from all people all over the world in need of assistance.  This past September, NDSC Multicultural Program Director, Matthew Fernandez, traveled to Monterrey, Mexico to attend the seventh “Congreso Síndrome de Down”.  While there, Matthew met leaders, professionals, and parents from the Down syndrome community from Mexico and other Latin countries. He extended invitations to all to attend the 2019 NDSC Convention in Pittsburgh and looks forward to continuing providing outreach programs to Hispanic families.

Year-End Giving

As 2018 comes to a close, we need your help in reaching our Year-End Campaign goal of $180,000. Together, we can change the world for individuals with Down syndrome and their families, and with your contribution and compassion, we can change communities across the world.

This year, the NDSC has embarked on a mission to bring critical education and support to areas with significant health disparities through The National Down Syndrome Congress Center for Outreach & Education. This Center, our largest initiative since the launch of our Annual Convention, partners the NDSC with organizations across the country to provide outreach to underserved rural, tribal, and urban communities; these conferences are provided in both English and Spanish. In addition, we will be changing school systems nationwide, as we take our acclaimed Educators Conference on the road. In December we will travel to Tennessee to present our inaugural Educator Conference.

We have already received requests for Rural Outreach programming in 2019 from Alabama, Alaska, Arizona, Connecticut, Georgia, Ohio, Iowa, Indiana, Illinois, Virginia, and West Virginia and anticipate that requests will double within the next 12 months.

But we can only meet the need –and change lives –with your help.

Won’t you please help us make a difference in 2019? There are so many families across the country in need of support, and that’s why the NDSC needs you.

To see all that the NDSC Center for Outreach & Education will provide, and make your Year-End donation online, click here to visit our website.

NDSC Convention News

Each year, thousands of people from across the globe attend the NDSC Annual Convention. For most, it is to hear the latest information from top experts. For others, it is a great vacation. However, for nearly all, it is the “largest family reunion in the world”!  We hope that you are planning to join us for our 47th Annual Convention in Pittsburgh, Pennsylvania, June 27 – 30, 2019.

To learn more about what the 2019 NDSC Conference has to offer please visit the About the Convention page of our website.

Call for Speakers

The Convention Planning Committee has already received dozens of speaker proposals from world-renowned experts with presentions on important topics such as transition planning, behavior, advocacy, and much more. Do you know of a speaker that would be a good fit for our families?

If so, please invite them to submit an NDSC Workshop Proposal Form for consideration.

The Youth & Adults Conference Team is looking for engaging self-advocates (individuals with DS age 15 and older) to share their talents, experiences, and perspectives with their peers during the Youth & Adult Conference sessions.

Self-advocates interested in presenting during the Youth & Adult Conference at the 2019 NDSC Youth & Adult Conference should submit a proposal here.

The submission deadline for both general speakers and self-advocate presenter proposals is Wednesday, January 2, 2019.

Stay up to Date on Convention Details

Keep checking NDSCcenter.org and our Facebook page for the most up to date convention announcements, including our “Evening of Champions” featuring national and local sports personalities.

Sponsorship Opportunities

The NDSC could not reach and serve the vast number of families that we do without the financial support of businesses and individuals, personally and professionally connected to our organization. These sponsorship dollars allow us to keep the cost of attending the NDSC Annual Convention at a minimum. In fact, sponsorship funds help keep attendee costs at less than 50% of our actual convention costs.

NDSC Convention sponsors reach thousands of families, professionals, and service providers from the Down syndrome community. The 2019 Sponsorship Proposal includes sponsorship levels and opportunities for every budget and packages are customizable to suit the needs of your organization.

If you would like to discuss sponsorship options, contact NDSC Development Director, Kathy Edwards, at Kathy@ndsccenter.org.

For more information and to view the full 2019 Sponsor Packet visit the Sponsorship Opportunities page of our website. 

Thank you to our Early Bird Sponsors who have already committed to joining us in Pittsburgh!
2019 Early Bird Sponsor Banner_Nov

Advocacy Made Easy

Are you interested in becoming involved in advocacy and policy but just don’t know where to begin?
Let us help you!
During the Advocacy Training Day at the NDSC Convention this past summer, self-advocate, Christopher Bennett, presented the Advocacy Toolkit for Self-Advocates that he created with the help of NDSC Policy and Advocacy Director, Heather Sachs. This toolkit contains valuable information for self-advocates or anyone interested in learning more about advocacy. The toolkit includes information on how a bill becomes a law, tips when meeting with legislators, ways to become involved, and much more.Click here to view a free online version of the Advocacy Toolkit for Self-Advocates.

For more information on advocacy, to receive Action Alerts, and stay informed visit the NDSC Policy and Advocacy page.

To join the NDSC Member advocacy group click the NDAC logo.

#SocialButterfly Becomes a Holiday Butterfly

Thank you to all who participated in the October #SocialButterfly Online Challenge.  We had a great response to the campaign, and several people have asked if we could continue the fun through the Holidays. Of course, we said “YES”!  So all of you Social Butterflies can now be Holiday Butterflies, (we will still use the #SocialButterfly) and help the NDSC raise funds through the year’s end!Year-End Giving, through a #SocialButterfly Facebook Fundraiser, participants will earn the same prizes as October participants: $321 raised earns a long sleeve challenge t-shirt, $750 raised earns a limited edition challenge Yeti tumbler, and those who raise $1000 will earn a limited edition rolling cooler and the chance to win a $500 NDSC Convention scholarship with 3 nights hotel accommodations in Pittsburgh!

Congratulations to Jean Shoup, winner of the $500 NDSC Convention scholarship,including 3 nights hotel accommodations in Pittsburgh.

In the Community

LuMind RDS Launches New Clinical Trials Across 11 Sites in the U.S.

LuMind RDS has launched the Down Syndrome Clinical Trials Network (DS-CTN). With a combined $3M commitment from the Alana Foundation and biopharmaceutical companies H. Lundbeck A/S and AC Immune SA. “DS-CTN will allow the rapid advancement of new treatment options and facilitate the safe clinical evaluation of the most promising treatments and interventions. For people with Down syndrome, who have not been a research priority in the past, and for their families, having treatments and interventions to improve sleep, speech, cognition and prevent early Alzheimer’s onset is long overdue and the DS-CTN network will speed up such progress,” says CEO, Hampus Hillerstrom.
Click here to learn more about the Lumind RDS Down Syndrome Clinical Trials Network (DS-CTN).

IntelligentLives Project

After 2 years of work, our friend and award-winning filmmaker, Dan Habib of INTELLIGENT LIVES, has released four FREE, short films on effective practices in postsecondary transition for young adults with disabilities.
Click here to watch these short documentaries that show how to Open Doors to college and careers for students with disabilities.