by: Ronni Blumenthal, Phelan-McDermid Syndrome Foundation CEO.
PMSF is offering a new Neuropsychiatric Support Program featuring Dr. Tesi Kohlenberg, MD.
We are very pleased to announce that the Foundation is bringing Dr. Tesi (Teresa) Kohlenberg on part time to assist our Family Support Specialist, Carla D’Imperio, in helping families whose loved ones have neuropsychiatric illness. It is not uncommon for people with Phelan-McDermid syndrome to develop new neuropsychiatric illness around or after puberty. This certainly does NOT happen to everyone, but we are seeing an increase in cases as our community ages, and as we become more aware of this pattern in people with Phelan-McDermid syndrome.
Some people with Phelan-McDermid syndrome face neuropsychiatric illness as they get older.
Most of Tesi’s time will be focused on supporting families who are in crisis, and sharing information with their medical teams, but she will also work with Carla to make sure that families get the most out of the Foundation’s resources, such as the information and videos from the Virtual Conference talks and the treatment guidelines developed by the Phelan-McDermid Syndrome Neuropsychiatric Consultation Group. The goal is to help you to develop a team and a plan of care for your loved one.
Dr. Kohlenberg knows Phelan-McDermid syndrome and understands our families.
Many of you already know that Tesi is both a child psychiatrist and a Phelan-McDermid syndrome mom whose daughter developed severe neuropsychiatric illness in her teens. Tesi has spent the past several years both researching neuropsychiatric challenges in Phelan-McDermid syndrome and supporting families facing these challenges. She has been a tireless advocate and educator.
Tesi is a member of our Medical Advisory Committee, and with Dr. Alex Kolevzon founded the Neuropsychiatric Consultation Group (NCG), a free consultation service that provides doctor-to-doctor support from experts on Phelan-McDermid syndrome to doctors caring for people with Phelan-McDermid syndrome.
We are here to support you.
If you would like to talk further about neuropsychiatric issues affecting your family member, please reach out to Carla D’Imperio at carla@pmsf.org, and she will work with you to figure out how the Foundation can best help.