DSAA Moms Learn About the Latest Research

DSAA Moms enjoyed a great and informative night at the DSAA Mom’s April Event! Dr. Stephanie Sherman, a professor in the April Mom's NightDepartment of Human Genetics at Emory University in Atlanta, spoke on genetic research and latest developments. Her training is in the area of genetic epidemiology and she has been involved in the coordination of multi-site projects to unravel the genetic architecture of complex traits and to understand potential gene-environment interactions. Currently, she is involved in research to understand the causes and consequences of Trisomy 21, or Down syndrome. She is also the co-Director of the Down Syndrome Center at Emory University.

NOTE: the genetic research discussed is NOT to eradicate Down syndrome or stop the triplication of the 21st chromosome during conception. It focuses on how to improve the lives of individuals with Down syndrome as well as understanding better the medical conditions that those individuals with Down syndrome are at a higher risk for (Alzheimer’s being an example).

Some highlights from our discussion:

MIT recently announced the $28.6 million gift from the Brazil-based Alana Foundation to establish the Alana Down Syndrome Center will combine the expertise of scientists and engineers in an effort to increase understanding of the biology and neuroscience of Down syndrome. The center and an associated technology-development program will work to accelerate the generation, development, and clinical testing of novel interventions and technologies into the disorder.

The National Institutes of Health has awarded $22.2 million in supplemental funding to bolster support for Down syndrome research ranging from basic to clinical. The investment is part of the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down SyndromE) project, which was launched in June 2018 in response to a Congressional directive to develop a new trans-NIH initiative to investigate critical health and quality-of-life needs for individuals with Down syndrome.

“We have a unique opportunity to improve health outcomes for those with Down syndrome by increasing their inclusion in research,” said NIH Director Francis S. Collins, M.D., Ph.D. “People with Down syndrome are at risk for many of the same conditions as the general public such as Alzheimer’s disease, sleep apnea, heart disease, and autism, and it is my hope that this effort will provide meaningful insights to find treatments that benefit both populations.” INCLUDE’s research strategy is distinct in that it seeks to improve the health of people with Down syndrome, while simultaneously investigating the risk and resilience factors for common diseases shared with individuals who do not have Down syndrome.

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Mom's Night Out with Dr. Amy Talboy

February DSAA Mom's Night OutEarlier this month Dr. Amy Talboy from the Emory Down Syndrome Clinic came to our mom's night out group. She spoke to the moms about the importance of sharing all information with your child's doctors. For example, Supplements are very commonly used by moms but many have potential adverse side effects, as well as possible interactions with medication or other supplements.  Examples of supplements include (but are not limited to) vitamins,  probiotics, and natural herbs.

Dr. Talboy explained that we need to be aware of all of the ingredients, their doses compared to daily recommended doses, known possible side effects, and how they are expected to affect the body (positive or negative).  It is important for parents to research and ask what is in the supplements to avoid more serious issues, such as liver problems, or effects on bleeding. Dr. Amy Talboy is available to offer guidance when choosing supplements.  

 

Photo of Amy Talboy

Visit the Emory Down Syndrome Clinic.

Amy L. Talboy, MD, FAAP

Medical Director
Assistant Professor, Department of Human Genetics and Pediatrics, Emory University SOM

Office: 1365 Clifton Road NE, Building A, Suite A1500, A1507B

Phone: 404-778-8590

Email: amy.talboy@emory.edu

Register for March 2 Mom's Monthly Outing!

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Join us for a fundraiser and silent auction on World Down Syndrome Day

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Join DSAA for Special Advocacy Opportunity in Washington

Join DSAA for a three-day, whirlwind trip to Washington, D.C., March 4-6, 2019 to participate in the NDSS's Buddy Walk on Washington Advocacy Conference. This is a great opportunity to make memories, bond with fellow DSAA friends and make an impact by advocating in our nation's capital. 

Schedule:

  • Monday,  March 4: Depart Atlanta Monday evening, drive through the night
    • It is a 10-hour bus ride without stops. We will make one stop at least on the way up. Coming back to Atlanta we will possibly stop for dinner, it all depends when we leave D.C. and what time we want to hit Atlanta.
  • Tuesday, March 5: Arrive in Washington Tuesday a.m.
    • Training all day
    • On your own in D.C. Tuesday night after Happy Hour 
  • Wednesday, March 6: Going to the Hill all day. As soon as we are done we will start heading back to Atlanta.

Costs:

  • The NDSS $50 registration includes: (Please register for the conference on your own at give.classy.org/BWW2019. This only confirms conference attendance. You must RSVP with Sheryl to be included on the hotel and transportation with DSAA.)

    • Training on Tuesday
    • Going to the Hill on Wednesday
    • Lunch on Tuesday
    • Cocktail hour Tuesday night
    • Breakfast on Wednesday

 

  • Hotel: $199.00 (this does not include taxes)
    • Sheraton Pentagon City

      900 South Orme Street, Arlington, VA 22204

      Hotel Information:

      Book your group rate for NDSS

      Have any questions? 

      Email npatton@ndss.org.

 

  • Transportation: TBD depending on the number of people registered and the size of the vehicle. RSVP for a spot on the bus with Sheryl.Arno@dsaatl.org.

 

  • On Your Own Meals to Plan for:
    • Breakfast and Dinner- Tuesday
    • Lunch and Dinner- Wednesday
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DSAA Holiday Fun

Our annual holiday celebration was great fun. We were so happy to see so many of you. 

The Titanium team from Atlanta Allstars chose to forge their "holiday " party to come volunteer at the DSAA holiday party again this year and they helped each of our little guests enjoy the games, dance floor, crafts, and the bouncy house. The Cosplay Volunteers of Atlanta sent some special superheroes and of course, we had our special guest Jolly Old Santa.

Santa 1Santa 2Party 3Party4

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Support Our Community on Small Businesses Saturday and Every Day!

This Small Business Saturday, and Beyond, Support the Businesses Owned by our Self Advocates and Thier Families!

We have compiled a few businesses run by people in our community and encourage you to check them out! 

Need some special holiday cards? Jenna and Donna make beautiful handmade cards.

Looking for that perfect gift?

  • Purchase a Candidly Kind T-shirt designed by self-advocate, Grace Key
  • Choose one of author Desley Quinby's book series centered around KC, a hero who has Down syndrome
  • Purchase HERE I AM by Susie TenEyck) for the acceptance and inclusion of people with Down syndrome
  • Order a delectable pie from Darden's Delights
  • Purchase the best in skincare from Tachi Hahn and Rodan + Fields

Getting ready for a big move? Michael Dodd at MD Inspections LLC offers pre-listing, new construction, four point, and pre-closing inspections.

Travel plans in the New Year? Stephanie Cantwell and Lost in Adventure Travel are here to help! She can help you take advantage of all that her amazing partners have to offer to make your adventure as inclusive as possible.

Get all  the details:

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