Smith-Magenis Syndrome Clinic

The DevMed specialty clinic team was formed by 2 of the foremost specialists on SMS: Brenda Finucane, MS, LGC, and Barbara Haas-Givler, MEd, BCBA. Ms. Finucane and Ms. Haas-Givler have authored several publications on the educational and behavioral manifestations of SMS, and both have served on the Professional Advisory Board for Parents and Researchers Interested in Smith-Magenis syndrome (PRISMS), the international support organization for SMS. Ms. Haas-Givler continues her involvement on the PRISMS Professional Advisory Board alongside DevMed Director Cora Taylor, PhD.

What you should know about Smith-Magenis syndrome:

• SMS is caused by genetic changes on chromosome 17 in the p11.2 region, which includes the RAI1 gene. This condition is associated with a specific pattern of physical, developmental and behavioral features, including:
  
  • Developmental delay/intellectual disability
  • Attention-seeking behaviors
  • Characteristic facial appearance
  • Self-injurious behaviors
  • Skin and nail picking
  • Hearing and vision problems
  • Sleep disturbance
  • Speech difficulties
  • Impulsivity and aggression
• Despite these challenges, people with SMS have much potential and often respond well to educational and behavioral strategies designed to meet their special needs.
• The diagnosis is confirmed by genetic testing.
• People with SMS rarely have a family history of the condition.
  
  

Why choose Geisinger’s Smith-Magenis Clinic?

On SMS Clinic days, families can work with a multidisciplinary team of providers and researchers in the fields of:

• Neurodevelopmental pediatrics
• Genetics and genomics
• Psychology
• Speech-language pathology
• Behavioral health
• Sleep medicine

Build your community

DevMed’s SMS clinic also provides families with the opportunity to connect with other families with a child with SMS. Families have shared their positive experiences with building their community and sharing resources.

Get help where you are, from experts who understand

DevMed’s team of specialists is available for local and long-distance consultations to help schools, agencies and families address the complex needs of children with Smith-Magenis syndrome across the lifespan.

Participate in innovative research

The DevMed SMS clinic is one of the PRISMS Clinic Research Consortium (PCRC) sites and is involved with SMS research. For more details about our research studies, email devmedstudies@geisinger.edu.

Resources

PRISMS - Parents & Researchers Interested in Smith-Magenis Syndrome
DevMed-approved resources for children with special developmental needs