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Family Matters Survey

Do you have a child with VCFS between the ages of 2 and 18 years of age? Would you like to help health professionals understand your family’s experiences in the health care system, school, and community? We are seeking parents of children with VCFS to participate in a one-time mailed survey to help improve the systems of care for children with VCFS, DiGeorge anomaly, and/ or 22q deletion syndrome.The purpose of this study is to help health professionals learn about the parental experience of raising a child with velo-cardio-facial syndrome (VCFS), DiGeorge anomaly, and/or 22q11.2 deletion syndrome.If you would like to receive a mailed survey or would like additional information about the study, please visit the 22q Family Matters website at www.22qfamilymatters.org or contact Wendy Looman by email at , or call  612-624-6604. 

Wendy Looman is a nurse researcher at the University of Minnesota School of Nursing and a member of the Upper Midwest VCFS/DGS Community, a collaboration of health care providers, researchers, and institutions dedicated to serving children and families affected by VCFS.

Please Help Us Improve Healthcare for Families with VCFS

If you are the parent or primary caregiver of a child with Velo-cardio-facial syndrome (VCFS) or 22q11.2 Deletion syndrome we are asking for your help. We are conducting a study to explore parents/caregivers’ experience caring for a child with 22q11.2 Deletion syndrome.  Participation in the study involves completing an anonymous online survey. We hope that this study will provide us with valuable information about how families are coping with the issues that face them which will enable us to educate other healthcare professionals about families needs.

If you are interested in participating in this study, or would like more information, you can access the survey by clicking this link.

Renee E. Hilber
Genetic Counseling Graduate Student
University of South Carolina
E-mail:

Please Help Us Improve Genetic Counseling for Families with VCFS

I am a graduate student in the Genetic Counseling Program at Brandeis University in Waltham, Massachusetts.  I am conducting a study to explore parents’ experiences with clinical information regarding 22q11.2 Deletion syndrome (22q11.2DS), specifically Velocardiofacial syndrome (VCFS).  The study will focus on specific information parents have accumulated and information they would like to receive.  I hope this study will help genetics professionals to better meet parents’ needs in the future.
 
Participation in the study involves completing an anonymous online survey.  Participation is open to one or both parents of a child 21 years or younger diagnosed with VCFS, or the primary caregiver of a child 21 years or younger diagnosed with VCFS.
 
If you are interested in participating in this study you can access the survey by clicking this link.

Amy Sachs
Genetic Counseling Graduate Student
Brandeis University
E-mail:

Brain Structure and Function in Children and Adolescents with VCFS 

Researchers at the University of Minnesota are studying brain structure and function in individuals with VCFS/DiGeorge syndrome (22q11.2 deletion). Parents, if your child is between the ages of 8-19 and has been diagnosed with VCFS/DGS, please call to learn more.  Participation involves a diagnostic interview, developmental and behavioral questionnaires, psychological testing, and functional brain imaging.  This is NOT a treatment study.  There is no cost to you for participating.  Families will receive feedback on the results of the interview and psychological testing.  A monetary stipend is provided. Call Dr. White or Angie @ 612-273-9834.