UNC Down Syndrome Program
At the UNC Down Syndrome Program our interdisciplinary team of specialists work together to optimize the health and wellbeing of people with Down syndrome in North Carolina. We are one of only a handful of Down syndrome clinics in the country to serve patients throughout their whole lifespan, from prenatal visits through adult care.
Our goals include:
- Making it easy for people with Down syndrome to access healthcare that is tailored to them
- Providing care coordination across specialties
- Connecting patients and families to community resources
- Offering innovative clinical trials
Services Offered
- Comprehensive medical exam
- Coordinated care with subspecialists
- Hearing screening by audiology
- Photo vision screening
- Evaluations by physical, occupational, and speech therapists
- Nutritional support by a registered dietitian
- Laboratory blood tests
- Imaging studies
- Developmental and psychological assessments
- Connection to community resources and services
Our nurse coordinator and family navigator with lived experience together with our team will support families through linkage to community resources, enrollment in Medicaid waivers, navigating school/IEP support, transition to adulthood, and more.
How the UNC Down Syndrome Program Began
Dr. Kate Westmoreland, the clinic’s founder and medical director, is a pediatrician and mother of a daughter with Down syndrome. Parenting her daughter sparked her desire to start a clinic that would offer specialized care- all in one place.
Why Choose the UNC Down Syndrome Program?
Our Interdisciplinary Team
Our team is comprised of some of the nation’s top leaders in Down syndrome care and research. We will work closely with each patient’s primary care provider to provide comprehensive, specialized, and compassionate care.
Dr. Kate Westmoreland, our medical director, is a pediatrician and will see children and adolescents.
Dr. Julie Monaco, a family medicine provider, will see adolescent and adult patients.
Ali Sommerstad our dedicated nurse coordinator, is a liaison between families and all of the providers involved in the patient's care. She will help prepare for appointments and also assist with follow up care. Her position is generously supported by the North Carolina Down Syndrome Alliance (NCDSA).
On Mondays, our interdisciplinary team includes our pediatrician, therapists (PT, OT, Speech/Feeding, lactation), audiologists, and a registered dietician. On Wednesdays, Dr. Westmoreland will see patients alone. We will be offering specialized clinic days to meet the unique needs of those with co-occurring conditions (psychological evaluations, obstructive sleep apnea, Down Syndrome Regression Disorder, etc).
Our team is committed to providing exceptional care for your child and your family.
Preparing for Clinic
If you have a school-aged child, please send us the patient’s IEP prior to your appointment by fax (984-364-3890) or email (DownSyndromeClinic@unchealth.unc.edu)
Appointments for the interdisciplinary clinic for children are on Mondays and may take up to 3-4 hours, plan accordingly and bring food, snacks and your child’s favorite books, games, and toys. If you are scheduled to come on a Wednesday, then you will not see the entire interdisciplinary team and can plan for a 1–2-hour visit. Adult visit times will be 1-2 hours.
If you do not have Medicaid, please carefully read our financial estimate and explanation of expected costs for being seen at our pediatric interdisciplinary Monday clinic. If you have questions or concerns, please call us and we may be able to book a visit for you with just the provider without the interdisciplinary team to meet your needs.
We have a social story about our interdisciplinary Monday clinic day that you can read with the patient prior to your visit so they know what to expect.
The best way to communicate with our team is through UNC MyChart. We ask that you take a moment to make sure you are registered and do not forget to look for messages from us! Our clinic phone number is 984-215-5557, but it will often go to voicemail, and you can expect a return call within 2 business days.
Clinic Location
The UNC Down Syndrome Clinic will be located in the UNC Children’s Specialty Clinic, located on the ground floor of the NC Children’s Hospital on UNC-Chapel Hill main campus.
Please allow 30 extra minutes before your scheduled appointment time for parking and navigating through the hospital. We have prepared specific instructions explaining how to park and find us.
A Leader in Research
Research is needed to help improve the lives of people with Down syndrome. UNC is a leader in Down syndrome research. UNC investigators are recipients of NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project funding. The Down syndrome program is working with the Carolina Institute for Developmental Disabilities (CIDD) to support current projects and bring new innovative research and clinical trials to NC. This will give our patients access to groundbreaking treatments.
Current Research Studies Open at UNC for individuals with Down Syndrome:
- DS-PALS Survivors
- A study to better understand the health conditions experienced by individuals with Down syndrome who are childhood cancer survivors.
- Ages 6-40 years who have been treated for leukemia (ALL or AML) in the past.
- Contact: juanita_ramirez@med.unc.edu
