Activities of Interest
Next Meeting of Bay Area NF Support Group: Saturday, April 4, 2026 — Time and Place TBA
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.
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.
Our last meeting was online. We had a great discussion about how we could help kids maintain their self-confidence and feeling of self-worth. Here's a summary.
Virtual Meet Ups: First Thursday of each month, from 7:30 to 8:30 pm. Have a question? Need support? Or just hang out with NF friends. NF California sponsors a monthly online NF meet up. No RSVP required. Please contact them for the link.
NF1 Adolesccent Study: Teens from 12 to 17 with a diagnosis of NF1 are needed for this research study. The objective of the study is to learn more about how teens with NF1 think, feel, and are preparing for adulthood. This study is online, and includes a neurpsychological report of testing and a $50 gift card. Protocol director is Dr. Tamar Green of BRIDGE Lab in Stanford's Department of Psychiatry and Behavioral Sciences.
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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.