Research Center

Vision

Every person with a chromosome 18 abnormality will have an autonomous and healthy life

Mission

To provide individuals and families affected by chromosome 18 abnormalities with comprehensive medical and educational information with a focus on treatment options

Goals:

  • To be the international medical and educational resource for individuals with chromosome 18 abnormalities and their families
  • To perform and facilitate clinical and basic research relating to chromosome 18 abnormalities
  • To develop treatments and interventions that promote a healthy and productive life for people with chromosome 18 abnormalities

Annice Hill is the project manager for the Chromosome 18 Clinical Research Center. She is responsible for enrolling study participants, collecting medical records, and coordinating visits to San Antonio. You may direct your questions about participating in our research studies to her at [email protected].

Courtney Sebold, MS is a certified genetic counselor who has worked with the Chromosome 18 Clinical Research Center since 2006.  Her main responsibilities include communicating with families affected by chromosome 18 conditions as well as other professionals.  This might mean having conversations with parents who have just learned about a diagnosis; writing or editing a scientific manuscript about chromosome 18 conditions; pulling together a newsletter or an article for the parent advocacy group (the Registry); or giving presentations at the Registry conference and other professional meetings.  She can be contacted at [email protected].

Bridgette Soileau, MA participates in the neuropsychological assessment process by administering and scoring a number of the parent questionnaires.  She also works closely on coordination of the neuropsychological data base.  She can be contacted at [email protected].

For more information on our research center, Click Here!