BRIDGE is currently recruiting participants for several studies

Noonan Syndrome Study: In-Person

We’re inviting children ages 5 to 17 with Noonan Syndrome to participate in a neuroimaging research study exploring the connection between brain development and behavior in children with Noonan Syndrome. Participation involves a one-day in-person visit at Stanford University, followed by a second day of online assessments. As a thank you, families will receive a personalized report summarizing the results and a $100 gift card. Check your eligibility here: https://redcap.link/bridge_studies

Noonan Syndrome Study: Remote

We’re inviting children ages 5 to 17 with Noonan Syndrome to participate in a neuroimaging research study exploring the development and behavior in children with Noonan Syndrome. Participation typically involves one day of online assessments. As a thank you, families will receive a personalized report summarizing the results and a $50 gift card. Check your eligibility here: https://redcap.link/bridge_studies

Neurofibromatosis type-1 Adolescent Study

We’re inviting children and teens ages 12 to 17 with Neurofibromatosis Type 1 (NF1) to participate in a research study exploring how adolescents with NF1 think, feel, and prepare for adulthood. Participation involves a one-day virtual visit that includes online neuropsychological assessments. As a thank you, families will receive a personalized report summarizing the results and a $50 gift card. Check your eligibility here: https://redcap.link/bridge_studies

On-Demand Webinars

Resources

NF1 Parent Guidebook

The Children’s Tumor Foundation has a helpful guidebook for parents of youth with NF1. In this free book, they share important guidelines to help your teen develop into an independent adult. Of particular interest may be the sections on money management, self-advocacy, and finding a job. Guidebooks are available in English, Spanish, French, Italian, German, and Mandarin.

Transitioning to Adult Care

It can often be challenging for parents of youth with chronic medical needs to teach them to become more independent. However, this is extremely important to ensure that teens are adequately prepared to meet the demands of adulthood once it is time for them to transition. The Children’s Hospital of Colorado website has helpful information about this transition, as well as strategies that parents can use.

Organizations and Support Groups

RASopathiesNet

RASopathiesNet was founded in 2010 and is the product of RASopathies Network USA, a 501c3 Non-Profit, and the RASopathies Network UK. Their mission is to advance research to improve the quality of life for RASopathy families by bringing together families, clinicians and scientists.

Noonan Syndrome Foundation

The Noonan Syndrome Foundation (NSF) is the leading 501(c)(3) non-profit, charitable Noonan syndrome (NS) organization. Our mission is to Support, Educate, and Advocate for those with Noonan Syndrome.

Neurofibromatosis Network

The NF Network (formerly NF, Inc.) is a non-profit 501(c)(3) organization and was founded in 1988 by a group of people who were in some way affected by neurofibromatosis. We are the leading national organization advocating for federal funding for NF research and building and supporting NF communities. The NF Network’s goal is to eradicate the health issues, pain, isolation and uncertainty that the diagnosis of NF inflicts.

Parents Helping Parents

Get information, find resources, and build support for families raising children and adults with disabilities.

A Parent's Guide to Learning Disabilities Associated with Neurofibromatosis

Resource for parents and educators of children with NF1 (provided by the Tumour Foundation of Canada).

Social Skills Group

PEERS® is a social skills group that was initially developed for autistic teens, but has since shown to be an effective, feasible, and acceptable treatment for teens with NF1. There are several versions of PEERS®, including for teens, young adults, dating, careers, and many more. There are adapted telehealth versions. To find a certified PEERS® provider, you can search on UCLA’s website: https://www.semel.ucla.edu/peers/find-peers%C2%AE-certified-provider

If you are interested in reading about PEERS® implemented in NF1, you can access the research articles here: https://link.springer.com/content/pdf/10.1186/s13023-024-03093-1.pdf, https://academic.oup.com/jpepsy/article/49/9/647/7697366

Infographics

Finding and requesting mental health resources Steps towards supporting children with RASopathies