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The SYNGAP1 Foundation Partners with Unite Us to Address Unmet Needs of SYNGAP1 Families and Improve Quality of Life
[September 26, 2023]

The SYNGAP1 Foundation Partners with Unite Us to Address Unmet Needs of SYNGAP1 Families and Improve Quality of Life


WASHINGTON, Sept. 26, 2023 /PRNewswire/ -- The SYNGAP1 Foundation, a nonprofit dedicated to improving the lives of families affected by SYNGAP1-related Disorders and a member of The Child Neurology Foundation (CNF), partnered with Unite Us, the nation's leading software company enabling cross-sector collaboration to improve people's health and wellbeing, to fill a gap reported by families in the Child Neurology Foundation's network. This partnership is a coordinated effort to build the ease of connection between patients and family support organizations. Through the partnership, The SYNGAP1 Foundation and Unite Us aim to address the unmet social needs of people and families nationwide.

CNF partnered with Unite Us in March of 2022 to connect families in the CNF network to vital resources and has now sponsored the SYNGAP1 Foundation to connect more families to community-based resources.

"We've heard directly from families in our network that they help sort through and connect with the resources that might be available to them," said CNF Executive Director and CEO Amy Brin. "After learning how Unite Us has been providing increased access to health and community-based organizations across the country, we knew we wanted to partner in creating this new resource for our network."

The prevalence of SYNGAP1-related disorders stands at 2% - 4% among every 10,000 individuals with intellectual disabilities worldwide, signifying a united effort to guide the way ahead. Every individual carries the torch of intellectual disability or developmental delay. Symptoms span a spectrum, encompassing 90% experiencing intellectual disability, 85% or more grappling with developmental epileptic encephalopathy (DEE), and a significant 60% or more navigating the realm of autism spectrum disorder. The gene mutation underlying SYNGAP1-related disorders profoundly affects brain development, shaping lives in unique ways.

Across the country, Unite Us will connect families that receive support from the SYNGAP1 Foundation to additional resources, such as 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 and an extensive network of advocacy organizations with unique programs supporting special needs families. Partners in the network are connected through Unite Us' shared technology platform, which enables them to send and receive secure electronic referrals, address people's social needs, and improve health across communities.

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



CNF, the SYNGAP1 Foundation, and Unite Us will securely connect people in need with community-based resources that can be difficult to navigate otherwise. Unite Us provides a central point of contact where health and social service providers can securely access and refer people to needed services while monitoring progress and measuring outcomes.

"Unite Us is excited to support the innovative work through CNF and its member organizations as they coordinate services for their constituents and track outcomes together. This collaborative effort is a perfect example of how the Unite Us network can be leveraged nationwide to support the health and well-being of communities," said Adrienne Sherk, AVP of National Partnerships at Unite Us.


Nonprofits, community-based organizations, and other providers who want to connect their clients and patients to SYNGAP1 Foundation's services within Unite Us' network can reach out to uniteus.com/contact/.

About the SYNGAP1 Foundation
The SYNGAP1 Foundation is dedicated to improving the lives of families affected by SYNGAP1-related Disorders, focusing on Advocacy, Education, and Research. We proudly steward the largest SYNGAP1 patient database in the world. Our data has been used to discover new mechanisms, biomarkers, and endpoints to support clinical trials.

We strive to make every SYNGAP1 community member feel valued, empowered, and connected. Our efforts in patient advocacy and family participation in ongoing research are already accelerating pathways to better treatments.

About Unite Us
Unite Us is the nation's leading software company enabling collaboration across sectors to improve the health and well-being of communities. Unite Us' secure solutions establish a new standard of care that identifies social care needs, helps connect people to services, and leverages meaningful outcomes data to drive community investment further. Through Unite Us' national network and software, community-based organizations, government agencies, health plans, and healthcare providers are all connected to better collaborate and meet the needs of the individuals in their communities. Follow Unite Us on LinkedIn, Twitter, Instagram, and Facebook.

About Child Neurology Foundation
Child Neurology Foundation is a patient advocacy organization on a mission to serve as the collaborative center of education, resources, and support for children and their families living with neurologic conditions and facilitate connection with the medical professionals who care for them. Each year, Child Neurology Foundation's work reaches hundreds of thousands of families in all 50 states and 70+ countries with programming focused on improving the patient care experience, attacking the effects of isolation, confronting systems-level change, and supporting research for the advancement of new cures and therapies. Visit childneurologyfoundation.org for more information.

SYNGAP1 Foundation Media Contact
[email protected]
240-347-0302

Unite Us Media Contact
[email protected]
(808) 485-9086

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SOURCE Unite Us


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