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News for Members and Friends, April 15, 2014

Yes, World Down Syndrome Day was last month, but we like to celebrate people with Down syndrome every day!    

Wow -- what a great response we got to this year's "21 Quotes Campaign" for World Down Syndrome Day! If you missed it, 21 Quotes in 21 Days by 21 People with Trisomy 21, was sent via email and posted on our social media sites each day in March, from the first to the 21st. We received more than twenty one submissions, so we wanted to include as many as possible in a slideshow for your viewing pleasure! (You can also view each of the 21 Quotes in our archives at this link.)

21 Quotes, the Slideshow 
21 Quotes, the Slideshow

Next Month is Mother's Day...

May 11 might seem like a long way off, but really, it's never to soon to start thinking about honoring your Mother, right? We have a couple of gift ideas that we know she'll love, and the NDSC will benefit. It's a total win-win!

You might remember the necklaces from Kendra Scott Designs, inspired by a creative self advocate in Texas, Isabelle:

Or, if flowers are on your mind for Mom this year, we appreciate it when you order through Flower Petal at this link:

Thank you for considering these options!

Patti Saylor to Testify Before Congressional Subcommittee

The Senate Judiciary Subcommittee on The Constitution, Civil Rights and Human Rights, chaired by Senator Dick Durbin (D-IL), will hold a hearing entitled "Law Enforcement Responses to Disabled Americans: Promising Approaches for Protecting Public Safety" on Tuesday, April 29th at 10:00 AM. This hearing is open to the public, and we encourage those in the DC area to attend.

Since Ethan Saylor's death, Mrs. Saylor has advocated for changes to police
Emma & Ethan Saylor
training and other policies to avoid similar tragedies in the future. Patti believes "that this hearing will help save the lives of individuals with intellectual and development disabilities in the future." She says, "I look forward to sharing Ethan's story and ensuring his legacy lives on for others with Down syndrome and other disabilities."

If you are unable to attend the hearing, but would like to submit a statement, Chairman Durbin invites advocates and stakeholders to offer their perspectives and experiences on these issues by submitting written testimony to be included in the hearing record. These statements help educate Committee members about this issue and are important to demonstrating community interest. (Statements must be submitted as a PDF or Word Document of 10 pages or less, and should be emailed to as early as possible, but no later than Monday, April 28, 2014 at 5:00 p.m.)

You can help Genetic Counselors Do Their Jobs Better

In an ever-changing political landscape for people with disabilities and disability rights, it is as important as ever for doctors and other healthcare professionals to be aware of how people with disabilities and those closest to them interpret disability. For this reason, NDSC members are invited to participate in a research survey that will be used to help healthcare providers understand how people think about disability.

Matthew Hall is a genetic counseling student at California State University, Stanislaus, and hopes this research will inform and improve the way genetic counselors speak with their patients, and help healthcare providers communicate more effectively with patients and families. Your opinion will make a difference! Please take the time to participate in his survey:

(Everyone who completes the survey will have the option of entering to win one of four $50 gift cards.)

Have you registered for this summer's
Giant Family Reunion?

Yes? Hooray for you! If you haven't, don't wait any longer. Three of our Kids' Camp sessions are already filled to capacity, and the Youth and Adults Conference is getting very close.

We have a terrific line up of Keynote Speakers this year! You won't want to miss the amazing story of the Pearce brothers, who are featured in the HBO film, The Crash Reel. You'll also hear from Clemson LIFE program student David Saville, and how community inclusion has been important in his life. Not to mention the wonderful Paula Kluth, who makes it her life's work to help students get an inclusive education.

Visit our website to see the most current list of workshops and speakers (schedule still subject to change), as well as information about all of our extra activities, including NDSC's Day at the Ballpark.

We've added an entire workshop cycle this year, which will take place on Friday afternoon beginning at 3:30pm. Make sure your travel plans allow you to take part in all of the events on Friday. See the schedule at a glance for more information.

And don't forget 321 Dance! This is your chance to let your friends and family support the NDSC, by supporting you on your very own fundraising page!

Making a difference. One family at a time.

National Down Syndrome Congress
30 Mansell Court, Suite 108
Roswell, GA  30076

800-232-6372; 770-604-9500

Fax: 770-604-9898| Email: | Website:
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