New Partnership Announced to Help Families Impacted by SYNGAP1

The SYNGAP1 Foundation, a nonprofit patient advocacy group dedicated to improving the lives of families affected by SYNGAP1 and related overlapping neurologic disorders, has announced a new partnership with Unite Us, a technology company specializing in the development of coordinated care networks of health and social service providers. This new partnership will help support patients and families in the SYNGAP1 Foundation by providing access to additional resources:

• Assistance with peer support programs
• Early intervention programs
• Special education services
• Respite care programs
• Clinical experts
• Parental training programs
• Access to local social services
• Special needs financial planning
• Advocacy organizations with unique programs supporting special needs families

The partnership was developed in response to a gap in services identified by families in The Child Neurology Foundation, a nonprofit providing education and support for caregivers and children living with a neurologic condition.

"Our mission is to empower families facing the challenges of SYNGAP1-related disorders. In partnership with the Child Neurology Foundation and Unite Us, we're bridging the gap between health and social care, ensuring our community's needs are met," said SYNGAP1 Foundation’s President and Founder, Monica Dudley-Weldon, MScL.

SYNGAP1-related disorders affect 2% to 4% among every 10,000 individuals with intellectual disabilities and result from pathogenic variants in the SYNGAP1 gene, which is involved in the regulation of synaptic plasticity and neuronal homeostasis in the brain. Although the clinical characteristics are varied, the most common symptoms of SYNGAP1-related disorders include learning disabilities, epilepsy, behavioral changes, autism spectrum disorder, and sensory processing disorder.