Monica Dudley-Weldon embarked on a heartfelt quest for answers when she noticed that her twin son, Beckett, was not reaching his developmental milestones as expected. With the wisdom gained from raising three older children and now the twins, Pyper and Beckett, Monica's experienced eye detected distinct disparities in their developmental trajectories. These observations ignited her concern, particularly regarding Beckett's delays, prompting her to initiate a determined search for answers and assistance to support her son's development.
Monica's journey took a significant turn when she realized the scarcity of clinical information and resources available for SYNGAP1-related Disorders. Fueled by her determination to bring about change, Monica took action. In 2014, she assumed the roles of Founder, President, and Chief Executive Officer of the SYNGAP1 Foundation, previously known as Bridge the Gap - SynGAP Education and Research Foundation. This pioneering foundation was born out of Monica's dedication, along with a close-knit group of families, all sharing the common experience of having children affected by SYNGAP1-related Disorders. Together, they embarked on a mission to make a meaningful impact in the lives of those facing this condition.
From the very beginning, our vision was clear and comprehensive. We set out to establish a mission and business strategy that would encompass a range of program goals. These objectives were designed to make a meaningful impact by:
- Raising Public Awareness: Our mission aimed to elevate public awareness about SYNGAP1-related Disorders. We sought to ensure that this condition was well-understood by SYNGAP1 families, physicians, researchers, academic institutions, the rare disease community, and industry stakeholders.
- Providing Resource Information: Central to our vision was the commitment to furnish vital resource information about the disorder. We aimed to equip SYNGAP1 families with valuable knowledge and support to navigate the challenges they faced.
- Facilitating Collaboration: We intended to foster collaboration among various stakeholders, including researchers, academic institutions, and industry players. Our goal was to create a united front against SYNGAP1-related Disorders.
- Engaging with Government Agencies: We envisioned engaging with local and federal government and agency officials to advocate for the needs and concerns of those affected by SYNGAP1-related Disorders.
In essence, our vision encompassed a comprehensive approach that sought to address the multifaceted challenges associated with SYNGAP1-related Disorders, ultimately striving for a brighter and more supportive future for affected individuals and their families.
Our mission at the SYNGAP1 Foundation has remained steadfast. We are dedicated to:
- SYNGAP1 Awareness: We strive to raise awareness about SYNGAP1-related Disorders, ensuring that this condition is recognized and understood by individuals, families, caregivers, and the broader community.
- Advocacy: Our commitment extends to advocating for the needs and concerns of those affected by SYNGAP1-related Disorders, working diligently to ensure access to the resources and support they require.
- Education: We provide valuable educational resources to empower individuals and families, equipping them with knowledge to navigate the challenges posed by SYNGAP1-related Disorders.
- Research Support: We are deeply committed to accelerating research efforts, offering support to scientists, researchers, and institutions dedicated to unraveling the mysteries of SYNGAP1-related Disorders and advancing treatments.
Throughout all our programs and initiatives, our central focus remains the well-being and support of individuals affected by SYNGAP1-related Disorders, along with their families and caregivers. We firmly believe in the power of collaboration to drive research and improve outcomes, and this collaborative spirit is at the core of our mission.
Since September 2014, our organization has experienced rapid growth, driven by dedicated volunteers and parents. We initiated our journey by connecting with SYNGAP1 families, shaping our program priorities through shared goals and input. Simultaneously, we fostered collaborations with clinicians and researchers, building a diverse and united SYNGAP1 community.
Advocacy, Awareness, Education & Research
From there, we expanded our collaborations to include other rare disease patient advocacy groups with similar interests and goals. The relationships and collaborations we initially fostered have helped us build a solid organizational foundation, from which our programs and initiatives continue to grow and flourish.
Action = Impact
Our priorities include raising public awareness, patient and family advocacy initiatives, educational programs, scientific research conferences, and financial support for research.
Programs & Initiatives
Our programs and initiatives have expanded globally since 2014, while our mission to provide SYNGAP1 awareness, advocacy, education, and research support has remained focused and consistent. Below is a list of our core programs and initiatives that we support:
• Awareness & Advocacy
• Education – Patients, Families & Caregivers
• SYNGAP1 Patient Registry
• Research Collaborations and Partnerships
• Clinical and Educational Family Meet Ups
• Family Support Group on Facebook
• SYNGAP1 Centers of Excellence
• International SYNGAP1 Conferences
• Educational Materials
We are taking action to SYNGAP1 Foundation to therapeutic solutions for SYNGAP1 patients, caregivers, and families!