The latest news from NCDSA - Septembe 2022

Hot off the press...

Inclusive Housing Summit - November 10, 2022 - Parents and caregivers of children with Down syndrome often have a primary concern: who will care for their children once they are no longer able to do so? Where will they live? Will their lives hold dignity and purpose? Will they be connected to their community by making meaningful, productive contributions? These concerns are the driving force behind HOPE North Carolina’s efforts to create an inclusive community for people with and without disabilities in the Triangle area. Join HOPE NC at their first Inclusive Housing Summit. To learn more and to register, click here.

In case you missed it...

321 Coffee held its Grand Opening! It’s happening! 321 Coffee is officially open and welcomed the best baristas to downtown Raleigh! Visit them at their new storefront at Bloc[83] in downtown Raleigh at 615 Hillsborough Street.

Founded in 2017 with a folding table and a home coffee brewer, 321 Coffee opened its second permanent location. 321 Coffee is a coffee shop and roaster built on inclusion and currently employs over 30 adults with intellectual and developmental disabilities (IDD). They roast the coffee, take the orders, and make the lattes. 321 Coffee will soon have a third permanent location in downtown Durham in addition to the NC Farmers Market and downtown Raleigh.

Free Triangle Buddy Walk Registration

Welcome to the World Little Ones

Do you have a new baby or toddler? Are you expecting a baby? Receiving a Down syndrome diagnosis is often surprising, scary, and emotional. Please join us to share your story and socialize with other new families. The New Family Support Meeting is an opportunity for new families sharing a similar journey to connect with one another. Childcare is provided and siblings are welcome. Enjoy light refreshments and community. We look forward to seeing you there!

Information and Registration

Monthly Speaker Spotlight

Down Syndrome Regression Disorder (DSRD) is a rare neurocognitive disorder where otherwise healthy individuals with Down syndrome develop insomnia, catatonia, mutism, aggression, delusions, hallucinations, obsessive compulsive tendencies, and encephalopathy (being “out of it”) over a period of a few days to weeks. The cause of this condition is unknown but cutting edge research has identified a potential link to the immune system. Dr. Santoro will review the common symptoms of this condition and report on some of the new treatments for this in addition to discussion a new clinical trial opening in early 2023.

Dr. Santoro serves as the Director of Neuroimmunology and Demyelinating Disorders Program at Children’s Hospital Los Angeles. He is also an Assistant Professor of Neurology at the Keck School of Medicine at the University of Southern California. Dr. Santoro completed his undergraduate, masters, and medical degrees at Tulane University. He subsequently completed residencies in pediatrics and child neurology at Stanford University School of Medicine and subsequently had sub-specialty training in neuroimmunology and pediatric multiple sclerosis at Harvard Medical School. Dr. Santoro is a passionate clinician-scientist who has published over 50 peer-reviewed manuscripts. Dr. Santoro is one of only a handful of national clinician-scientists who treats neurologic disorders associated with Down syndrome. He has been instrumental in identifying systemic vascular abnormalities in persons with Down syndrome and moyamoya disease, a rare stroke disorder which affects persons with Down syndrome 26 times more frequently than the general population. Dr. Santoro also has clinical research expertise in inflammation as it related to cerebrovascular disease and neurocognitive disorders such as Down syndrome regression syndrome, of which he spoken on internationally. He currently serves on the American Academy of Neurology’s Health Policy Sub-committee and as the representative of the AAN to the American Medical Association. Dr. Santoro is a long-standing advocate for persons with disabilities and has lobbied locally in California and on Capitol Hill.

Virtual Speaker Series Info and Registration

IEP Binder Workshop

Do you have IEP documents spread all throughout your house? If you are like most Special Education parents, you do!

In this workshop we will guide participants through, step by step, organizing and building an IEP binder that is a useful tool to help track your child's progress, reference IEP questions and advocate for your child. Materials for complete binder will be provided if attending in person. You will leave with an organized IEP binder for your child!

**If attending virtually, a list of materials will be provided for you to purchase prior to the event. Register here

Hispanic Heritage Month

September 15 - October 15 is Hispanic Heritage Month and NCDSA wants to shine a spotlight on three opportunities for individuals with Down syndrome and their families within our Hispanic and Latino community.

9/24 - Picnic de Familias Hispanas - Raleigh (11am - 12pm) Registro

10/12 - Noche de mamas en espanol - Virtual (8pm - 10pm) Registro

Nuevo a NCDSA? Learn more here.

Read about three inspiring adults with Down syndrome from the Hispanic community around the world.

Afterschool Academy

The North Carolina Down Syndrome Alliance Afterschool Academy provides free weekly 1 hour sessions supporting growth in academics, communication, and social skills. The Afterschool Academy is staffed with credentialed teachers supported by interns and volunteers. Weekly Tuesday sessions are for students in 1st through 4th grades and weekly Thursday sessions are for students in 5th through 8th grades.

Information about dates and registration is coming soon. Check out NCDSA's Fall Event Registration to stay up to date.

The North Carolina Family Navigation Guide was designed for families and caregivers to explore information and resources across six life domains to guide them in planning for their child and family. To learn more about this valuable guide for families of children with Down syndrome and other disabilities, click here

People with Down syndrome are at an increased risk for complications from anesthesia for a variety of reasons including anatomical/physiological differences, higher rates of certain co-occurring conditions, and communication challenges. Brian Chicoine, MD, Medical Director, Adult Down Syndrome Center, has written an article about the types of anesthesia and sedation, the potential complications, and the factors in people with Down syndrome that might increase the risk of general anesthesia. Read the article and find other resources for people with Down syndrome here.

The LIFE-DSR study collects medical, physical, and behavioral data from adult participants age 25+. This is not a trial for new medication or therapy. Rather, researchers need data points—for example, height and weight, sleeping patterns, and blood samples—gathered over time to help researchers understand the physiology of people with DS. We're looking for more people, especially those age 35-44, to join! If you or your loved one are interested in learning more, you can complete this inquiry form, or email us directly for more information. Thank you!

Monthly Events and Activities

Unless otherwise noted, events and activities are held at the

NCDSA Training Center

2621-102 Spring Forest Road

Raleigh, NC

Conveniently located off 540 - ample parking

9/22 - T-21 Club Bingo 7:00 pm (Virtual)

9/24 - Hispanic Social 

9/24 - Social Saturday 9:00 am (Ages 0-6)

9/24 - Social Saturday 10:30 am (Ages 7-15)

9/25 - Sibshops 3:00 pm

9/29 - Improvaneer Workshop 7:00 pm (Virtual)

10/1 - New Parent Support Program 10:00 am

10/1 - T-21 Club Social 6:00 pm

10/5 - Homeschool Meetup 12:30 pm

10/5 - IEP Binder Workshop 7:00 pm (NCDSA Training Center & Virtual)

10/6 - T-21 Club Bingo 7:00 pm (Virtual)

10/6 - Dads' Night Out 7:00 pm (Durham)

10/7 - Moms' Night Out 7:00 pm (Greenville)

10/8 - Chipotle Dine Around 12:00 pm-8:00 pm (Raleigh)

10/9 - NCDSA Family Picnic 2:00 pm (Hickory)

10/11 - Coffee Connection 10:00 am

10/12 - Noche de Mamas 8:00 pm (en Espanol) (Virtual)

10/13 - Improvaneer Workshop 7:00 pm (Virtual)

10/15 - The Learning Program 8:00 am (Registration FULL)

10/16 - Triangle Buddy Walk 

10/18 - Afterschool Academy (Registration Coming Soon)

10/18 - NCDSA Virtual Speaker Series

10/19 - Homeschool Meetup 12:30 pm

10/20 - Afterschool Academy (Registration Coming Soon)

10/20 - T-21 Club Bingo 7:00 pm (Virtual)

10/23 - Sibshops 3:00 pm

10/25 - Afterschool Academy (Registration Coming Soon)

10/27 - Afterschool Academy (Registration Coming Soon)

10/27 - Improvaneer Workshop 7:00 pm (Virtual)

10/29 - Social Saturday 9:00 am (Ages 0-6)

10/29 - Social Saturday 10:30 am (Ages 7-15)

Information and Registration for September Events
Information and Registration for October Events
Registro de Eventos de septiembre
Registro de Eventos de otoño

Keep us up to date so we can keep you up to date!

Family Update
Non-Family Update

North Carolina Down Syndrome Alliance |

NCDSA Mission: To empower, connect, and support the lifespan of individuals with Down syndrome, their families, and the community through outreach, advocacy, and education in North Carolina.

NCDSA is a 501 (c) 3 nonprofit organization that relies on individual donations, sponsors, and grants.

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