Upcoming Consortium, Advocacy Day & Nominate a Self-Advocate

Happy New Year to all of our families and friends! A few quick reminders:

Gracie's Law Advocacy Day, January 29 - Join us at the Capitol as we advocate for Gracie's Law and organ transplant discrimination. For updates on the law, join the Facebook group.

Georgia Down Syndrome Consortium, February 29 - A day not to miss with sessions on health, behavior, sleep, healthy couples talk, educational transition, advocacy and so much more!

GDSC

 

3:21 Gala Event & Nominate a Self-Advocate, March 21 - Registration opens soon for our annual gala evening to mark World Down Syndrome Day, 7-10 pm at Sweetwater Brewery! Cast your vote now for Self-Advocate of the Year:

nominate self advocate

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Parent Advisory Committee for New Research Study

A new study funded by the NIH INCLUDE Project will be starting up soon! It will be conducted as part of the National Institutes of Health’s Pediatric Heart Network, and aims to investigate whether having heart surgery as an infant affects the way children with Down syndrome develop and learn.

We are creating a Parent Advisory Committee for this study and are seeking parents to join! Our hope is that family members will be partners in conducting this study by providing their first-hand insight and by serving as ambassadors for the study and linking our study team with the community. Individuals on our Parent Advisory Committee would be asked to meet (by phone) and complete online surveys to help us complete activities throughout the project:

If you are interested, we ask for a brief letter that states your background/experience, and your interest in being part of the advisory committee. No previous experience is needed.

Please let us know if you have any questions! We are excited to get this group together.

Angela Lombardo, Committee Chair
Nicole Baumer, Co-Principal Investigator
857-218-4329 angela.lombardo@childrens.harvard.edu

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Language is Important

dsaa language

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DSAA Update on Sheldon

Thank you so much to those that have made a contribution to Sheldon’s Fund. We have been overwhelmed by the outpouring of support to help this child and his family.

We know you are all interested in the status and updates on Sheldon. While we cannot give out specific details, we can tell you that we are working with several agencies to provide insight, support and advocacy for Sheldon and his siblings. You have entrusted us to direct resources to the appropriate places to best support Sheldon and we do not take that responsibility lightly. Please know that we are laser focused on ensuring that the entirety of your generous contribution will go directly to the care and supports that Sheldon needs now and in the future.

It has been so heartwarming to see so many people come to the aid of this family in need. We are truly fortunate to have such an amazing community.

Sincerely,

Clair Wallace, President
Sheryl Arno, Executive Director

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Sweet Caroline Grace

It is with heavy hearts we announce the passing of Caroline Grace Thome (January 12, 2017-December 16, 2019). Caroline was a sweet little girl whose greatest gifts to the world were her dancing, her waves and most recently, her million dollar hugs. Her favorite words were 'purple' and 'no.' She had an infectious joy that spread like wildfire everywhere she went. Caroline will be greatly missed by her parents Julian and Mandy, her two sisters, extended family and those who had the privilege of knowing her.

As a way to support the Thome family, please print the picture below and place it on your fridge as a reminder of Caroline's joyful legacy, and a reminder to pray for the family in the difficult days, weeks and months to come. Caroline, you are a true gem and we hold you in our hearts forever.  

Donations in Caroline's honor can be made to the DSAA Angel Fund.

Caroline Thome Memorial

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Buddy Walk 2019 Photos

Have you been reminiscing about the Buddy Walk too? We are sharing links to all the wonderful photos here and here so you can relive the day and get pumped for next year. Until then, mark your calendars for the Learning Summit on February 29th and the adults-only evening event on March 21st, World Down Syndrome Day. 

Happy holidays from your DSAA family; see you next year!

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