Volume 1 Issue 3 | March 2020
Where do we go from here?
The situation with COVID-19 is changing rapidly. NCDSA is monitoring the situation and will relay pertinent information that directly impacts the Down syndrome community. Until further notice, the NCDSA office will remain closed. Staff members will be working remotely. NCDSA can be contacted by leaving a voicemail message at 984-200-1193 or sending an email to info@ncdsalliance.org. For current information, please follow NCDSA on Facebook.

For the most current and accurate information about COVID-19, please rely on trusted and up-to-date information provided by the CDC or NC DHHS.
What has NCDSA been up to?
February was a busy month for NCDSA:

  • 7 Welcome Baby Bags were sent to families in 6 NC counties
  • 3 Information packets sent to prenatal and new to area families
  • 2 Family visits
  • 70 People enjoyed the Hispanic Social co-sponsored with Gigi's
  • 12 Dads participated in Dads' Night Out
  • 5 Moms participated in Moms' Night Out
  • 12 Parents were trained for the First Call Parent Mentor Program
  • 200 plus attendees at 2 regional conferences were introduced to NCDSA
  • 32 Attendees from 25 agencies attended NCDSA Down syndrome presentation
Continuing the NCDSA Mission
This Saturday, March 21st - World Down Syndrome Day - Rock your Socks at Home and share on social media! Take pictures of your celebration of your loved one with Down syndrome and help spread awareness.

Tag the North Carolina Down Syndrome Alliance and use these hashtags in your posts:

#RockYourSocks #StrongerTogether #NCDSA321 #NoLimits #NCDSA #WDSD
Get your FREE t21 T-shirt!
The majority of  NCDSA  funding comes from individual donations received throughout the year and during Buddy Walk season. NCDSA has a broad audience of supporters who lessen the fundraising burden on the families of individuals with Down syndrome who rely on NCDSA.

There are two ways to get a FREE t21 Down syndrome awareness t-shirt:

  1. Peer to peer fundraising is when supporters of NCDSA ask their network of friends and family to make a contribution to NCDSA allowing individuals to raise money on behalf of a NCDSA via online fundraising pages. This method enables people to use their social networks to maximize the impact of their fundraising. Online fundraising is easy to set up and you can personalize your appeal and ask your network to share on social media. Set up a Facebook fundraising page in honor of World Down Syndrome Day and you will receive a free t21 Down syndrome awareness t-shirt!
  2. Recurring donations are easy for donors to set up and assures your ongoing contributions directly benefit NCDSA. Recurring donations help NCDSA with budgeting and planning throughout the year. Join the t21 Club by setting up a recurring donation of $21 or more and receive a free t21 Down syndrome awareness t-shirt!
Round Up for Down Syndrome

Penn Station East Coast Subs is hosting a  Round Up for Down Syndrome campaign through March 21st. Customers can round up their purchase to benefit NCDSA! And, with a donation of $2 or more, customers will receive a Buy 1 Get 1 FREE coupon for a sandwich on their next visit.

Stop by one of the six Triangle locations and Round Up for NCDSA! Thank you!
Have you heard the great news? Direct results of the Eastern North Carolina Buddy Walk - last year NCDSA was able to hire Stephanie Hill as the NCDSA Eastern NC Family Support Specialist. She, in conjunction with Rebecca Reisig, Eastern NC Families Group Leader, have been busy providing programming, social events, and new and expectant family support directly in eastern North Carolina.

But.....we are not done yet.  NCDSA has opened our very first satellite office in Greenville, NC! We will use this location to directly serve all Eastern NC Families! In just 3 short years, NCDSA has a place to call home in Eastern NC. A place that families of children with Down syndrome will feel welcomed and supported. We absolutely could not do this without the financial support and commitment of our eastern NC families.
Meet Stephanie Hill
Eastern NC Family Support Specialist

Stephanie was introduced to the Down Syndrome community when her youngest daughter, Hannah, was born and diagnosed with Down Syndrome. Stephanie and her husband found that information and access to resources was difficult to find in eastern North Carolina. As she discovered resources and made new connections, she was determined to share that information with other families that found themselves in the same situation.

Stephanie is passionate about providing families an opportunity to connect with others that may be a benefit to them. She understands the fear and discouragement that comes with a lack of information, and wants to alleviate that burden for as many families as she can. She is thankful as a the NCDSA Eastern NC Family Support Specialist she is not only able to provide connections, but also resources and support.

Stephanie has a B. A. in Elementary Education from Southeastern F.W.B. College in Wendell, NC. As a Pastor’s wife, she is very active in their church. She also teaches part-time at the school where her two oldest children attend. She enjoys spending time with family and the occasional trip to the beach.
Meet Dawn DeSoto
Volunteer and Event Coordinator

Dawn DeSoto was raised in a family that supported her to develop her own ideas and embrace her creative mind. She started volunteering and fundraising at an early age and has always felt the need to give back to the community.

Dawn's ability to conceptualize, plan, and oversee execution of events provides a thorough and precise service as an event planner. With creativity and commitment to excellence, Dawn designs and executes events that will be memorable for both the participants and the organization. Most recently, s he has worked as a volunteer as the event coordinator for her local community center. She is also an avid soccer mom and is the soccer director for her local soccer league. 

Dawn and her children live in Clayton, NC with their two dogs. She loves coaching youth sports and attending Crossfit. Getting away to the mountains for a long hike is her favorite down time.
Tee Up for Down Syndrome
Golf Classic
The NCDSA Golf Classic Committee is cautiously optimistic that, despite the current situation, golfers will have the opportunity to participate in the third annual Tee Up for Down Syndrome Golf Classic on Monday, May 11th. We hope in eight weeks, we will be on the links enjoying the warmth and sunshine.

Volunteer Spotlight
Rebecca Emerson and her husband Joseph Sawruk, are parents to Lincoln (4) & Winston (2w/Ds). She recently retired from the US Air Force after 23 years of service. She was surprised and deeply touched by her colleagues donation to NCDSA in Winston’s honor. NCDSA’s mission is extremely important to Rebecca and since Winston’s birth she has connected with other families through the Fort Bragg Down syndrome support group, provided medical outreach at Womack Hospital, and has participated in NC Down Syndrome Advocacy Day at the NCGA. Rebecca finds this type of “work” extremely rewarding and is passionate about being an advocate.

Thank you Rebecca!!!
Advocacy in Action
NCDSA, along with other leaders in the NC Intellectual and Developmental Disability Community, is closely monitoring the plans of the NC Legislature. Scheduled to convene April 28th, the date and access to both legislators and legislative buildings is questionable. However, your state legislators are always a phone call or email away. You can find your legislator's information here.

NC Down Syndrome Advocacy Day is tentatively planned for Wednesday, May 27th. NCDSA will keep advocates updated on the event should the legislature be open for business as usual.
Monthly Research Focus
Longitudinal Investigation for Enhancing Down Syndrome Research
 LIFE DSR STUDY for Adult with Down syndrome 35 years and older

Scientists want to learn more about how adults with Down syndrome change as they age. They particularly want to develop tools to measure the changes that are associated with Alzheimer's disease for people with Down syndrome.

To participate in the LIFE DSR STUDY you must meet the following criteria:

  • You, the adult with Down syndrome, must have a study partner who has frequent interaction with you on a regular basis.
  • You (or a caregiver who may legally consent for you), in addition to your study partner, must be able to understand and be willing to sign the written consent form.
  • Your study partner must be able to facilitate your participation in the annual clinic visits as required by the study physician or coordinator and provide accurate responses to questions about you, the person with Down syndrome.
  • You, the person with Down syndrome, and your study partner must be capable of reliably completing the study requirements.

Participants can expect:

  • A standard health examination with a blood draw.
  • Tests to evaluate your memory, mood, behavior and ability to perform certain tasks.
  • 2 follow-up visits - one year and two years after your first visit to repeat the examination, blood draw, and evaluation tests.

Location:

  • Duke University Medical Center, Department of Medical Genetics

To learn more about the LIFE DSR STUDY or to participate, please contact Gretchen Nichting, Clinical Research Coordinator, 919-660-0757, Gretchen.nichting@duke.edu
2020 SUMMER CAMP DIRECTORY
A free resource guide for families with children who have special needs from the Family Support Network - UNC School of Social Work.

Healthcare & Direct Service Provider Training
NC Pediatric Society
August 14 & 15, 2020
Washington Duke Inn and Golf Course
Durham, NC
Rescheduled: October 8 & 9, 2020
Eastern AHEC Education Center
Greenville, NC
Keep up to date - connect with NCDSA
NCDSA Board of Directors Meetings
Third Monday of the month | 6:30 p.m. - 8:30 p.m.
By supporting NCDSA you help us embrace new families with welcome baby bags and provide expectant mothers with up-to-date resources.  You help to educate healthcare professionals on how to deliver a diagnosis of Down syndrome and provide healthcare guidelines for people with Down syndrome. Thank you!