Activities of Interest
Next Meeting of Bay Area NF Support Group at Stanford: Saturday, April 5, 2025. Online 9:00 to 10:30 AM.
Come join us for a discussion about NF and how it has affected your family. With the support of the Lucile Packard Children’s Hospital, this group brings together parents, grandparents, friends, and family of children and teens who have been diagnosed with Neurofibromatosis. The group is open to all families, whether your child is being treated at Kaiser, Stanford, UCSF, or elsewhere in the Bay Area.
A Zoom link will be sent out shortly before the meeting.You must be on our mailing list to receive the link.(See below.)
At our last meeting, in addition to our regular discussion, we heard from Katie Jones, Patient Education Manger for the western US with Alexion Therapeutics. Katie covered the basics of NF1 and plexiform neurofibromas, and provided information about resources for parents of children with plexiform neurofibromas.
Under our current schedule we meet three times a year — on the first Saturday in April, August, and December. We will send more information to persons on our mailing list closer to the time of the meeting. If you are not on our mailing list but would like to get on the list to receive meeting information (or if you are on our mailing list but would like to get off), email us at NFsupport@sonic.net.
Differences in Intercranial White Matter During Motor Learning in Children with NF1: Children between the ages 6 and 20 with a diagnosis of NF1 are needed for this research study on adaptive myelination. The objective of the study is to better understand intracranial white matter differences during motor learning in children with NF1. Within the study you would attempt to learn to juggle for six weeks, with brain imaging (MRI) and neurocognitive assessment done at the start of the study, after six weeks, and after six months ($50 payment after each MRI). Principal Investigator is Cynthia Campen, MD, of Stanford's Lucile Packard Children's Hospital.
Brain Imaging and Cognition in Children with NF1: Children between the ages 3 and 18 with a diagnosis of NF1 are needed for this research study. The objective of the study is to better understand the brain correlates of cognition in NF1, and includes brain imaging (MRI) and cognitive assessment. Principal Investigator is Cynthia Campen, MD, of Stanford's Lucile Packard Children's Hospital.
Brain and Behavior in Children with NF1: The Stanford BRIDGE lab (Brain Imaging, Development, Genetics) is recruiting children age 5 to 13 with a diagnosis of NF1 for a brain imaging research study. The objective of the study is to better understand brain development and behavior (particularly ADHD and autism) in children with RASopathies. The study requires a two-day engagement — one day involves virtual assessments and the second day involves an in-person visit to the BRIDGE lab in Palo Alto, California. All travel costs are covered, and the child participating will receive a full neuropsychological evaluation. A screening questionnaire for the study can be accessed here. Principal Investigator is Dr. Tamar Green, of Stanford's BRIDGE Lab.
