Down Syndrome Clinical Program
Your support for the Boston Children’s Hospital Down Syndrome Program provides critical financial support, enabling us to provide specialized services and treatment plans for our patients and their families. Please contact William Rakow (William.Rakow@chtrust.org) with questions or for more information on ways to support the program.
Learn more about the Down Syndrome Program »
Our Vision: All individuals with Down syndrome are physically and emotionally healthy, engaged at their highest capacity in school or vocation, have meaningful family and social relationships, and are valued members of their communities.
Our Mission: To partner with families, interdisciplinary providers, and researchers to evaluate, treat, and investigate medical, cognitive, neurodevelopmental, educational, mental health, behavioral and social needs of individuals with Down syndrome from the time of diagnosis until transition to adult care.
Wish List
Parent Educational Speaker Series: $500 (per session)
The Parents’ Educational Speaker Series provide monthly opportunities for parents of children with Down syndrome to receive specialized education on healthcare topics.
Distribution of Signing Times Baby DVDs: $1,000 (Purchases 100 DVDs)
We encourage early communication and the use of Sign Language by providing all new families with a Signing Times Baby Signs Volume One DVD. We believe that early introduction of sign language to babies and children with Down syndrome help improve their communication skills and lessen frustration.
Interactive Educational Workshops: $2,000
We offer workshops in American Sign Language, Infant Massage, Complex Care Support, Behavioral management, Visual supports and creating educational materials.
Educational Consultant Scholarship: $5,000
Children with Down syndrome seeking care in the clinic will have the opportunity for independent educational testing and review of educational programming by an experienced educational specialist.
Informational Guides: $10,000
We informational guides for families to learn more about specific topics such as Behavior, Early Communication Development, Toilet Training and more.
Quality Improvement Initiatives: $10,000
Development of Clinical Database to explore developmental / neurobehavioral phenotypes, incidence of co-occurring medical and developmental disorders (heart disease, autism, ADHD), risk factors / predictors of neurodevelopmental disorders, and response to treatments and interventions. This will involve the hiring of a Quality Improvement Specialist / Data Manager to capture clinical data for all patients across age span.
Patient Internship Opportunities: $20,000 per position annually
We are one of the first clinics to offer paid employment to a young man with Down syndrome in our Down Syndrome Program as a Patient Liaison as well as a two year paid apprenticeship program to teach adults with disabilities job skills in the healthcare setting.
