About Our Team
Bridge the Gap – SYNGAP Education and Research Foundation (501(c) 3) is a non-profit organization whose mission is to serve, educate and fund research for families coping with the effects of SYNGAP1 mutations. The leading organization advocating and raising funds for research and treatments for SYNGAP1. Our international outreach for SYNGAP1 children gathers critical information, which is needed to drive research towards more immediate therapeutic solutions. Bridge the Gap-SYNGAP mission is to improve the quality of life for people affected by SYNGAP1, provide family support, accelerating research and raising awareness so that every family and every child with SYNGAP1 can provide information that can guide us to a cure.
Bridge the Gap – Syngap ERF began in September of 2014. A group of parents of children living with SYNGAP1 mutations came together to begin a new journey. The common bond is one driven by a desire to raise awareness and search out treatments to improve the quality of life for these inspiring individuals.
Meet Our Executive Board
We come together with diverse levels of experience and skill sets that create a well-oiled machine, driving development and accomplishing strategic goals set to creating a path forward to treatments.
Charles Bergamo, J.D., ChFC®, CLU®, ChSNC®
Charles Bergamo is actively involved in the area of Planning for Individuals with special needs. He serves on the Connecticut Council on Developmental Disabilities and as Chairperson to the State of Connecticut Department of Developmental Services West Regional Advisory Council. These are advisory positions and voluntary. He is also actively involved in his daughter’s disability organization (Syngap 1). In addition, he spoken to national groups on the issues surrounding Planning for Individuals with special needs. As the parent of a child with special needs, his goal and passions are to pass that knowledge along to similarly situated individuals to help those families provide for and take care of the person they love.
In November of 2012, Monica, Founder of Bridge the Gap – Syngap ERF’s twin son, Beckett, was the first six patients in the world to be diagnosed with the gene mutation SYNGAP1 (6p21.3). She retired in 2016 after 23 years in education teaching secondary science. She is the Primary Investigator on the SYNGAP1 (MRD5) Registry and Natural History Study. She is a life member of the Worldwide Association of Female Professionals and a member of the first class of 2017 Illumina Ambassadors established in the United States. In addition to leading the foundation, she is an author, public speaker, consultant and advocates for rare disease legislation at both the federal and state levels. Several of her authored scientific publications that include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, and The Journal of Pediatrics. She has authored a book about her son Beckett’s diagnostic journey called “My Special Boy – Slow Moving Stream”. She is a graduate from East Texas Baptist University with a Bachelor’s of Science in Biology/Psychology (1991) and Secondary Certification in Education (1995). She is the wife of Chris Weldon and has five beautiful children, Haleigh (27), Taylor, USMC (24), Sawyer (22), and the twins Beckett & Pyper (11).
Member at Large/Senior Grant Writer/Education Director
Leslie is ardent an advocate for Autism and Rare Diseases. She began her career as an Early Childhood Educator and Family Services Consultant for General Motors after her graduation from Oakland University in Michigan. During the course of her career, Leslie worked for Educational Testing Services in Princeton, New Jersey, Front Range Community College in Westminster, Colorado and Texas Children’s Hospital in Houston, Texas. Leslie was a Special Educator and Administrative Manager for The Bridges Program at Texas Children’s for five years. Bridges was a specialized, therapeutic program for young children with delays in communicating and relating, including Autism. Leslie then worked for five years as a Research Grant Administrator in Research Administration at Texas Children’s. Leslie began work as a Grant Writer to help support many of the programs she worked with over the last 25 years.
Leslie became an advocate for Rare Diseases in 2009 after being diagnosed with two rare diseases. Since leaving Texas Children’s in 2015, Leslie has volunteered her skills as an Advocate to help provide to support individuals affected by Autism and Rare Diseases and briefly as a Community Engagement Liaison for NORD. She has also provided assistance to non-profit organizations as an Advocate and Grant Writer. Leslie is excited to join the Advisory Board in order to help support the mission of Bridge the Gap – Syngap Research and Education Foundation.
Leslie lives in League City Texas with her husband and two dogs. She is the proud Mom of two boys and two step-daughters. During her free time, Leslie enjoys travel, reading and spending time with her family.
Member at Large and Corporate Alliance Chairwoman
Jaime is the Associate Director, Head Global Serialization Program at Eisai, Inc. As senior-level program manager is responsible for multiple global project teams supporting pharmaceutical serialization. Accountable for the global serialization system (rfxcel) connecting inbound (CMO, sites) and outbound (3PL, governments) data. Manage global policies governing system troubleshooting through global change controls. Serialization Subject Matter Expert. Jamie’s son Mason was diagnosed with SYNGAP1 in the summer of 2019.
Candace Gross Taylor
Candice Taylor is an Alternate Administrator at Chrysalis Spectrum. Born and raised in
Houston, Candice became an advocate/volunteer for the special needs and Rare disease communities which is close to her heart. Her oldest daughter was diagnosed with Autism, then a rare disease SYNGAP in 2014. She has dedicated over 10 years working with nonprofit organizations, her mission in life has been directed towards volunteer work within the special needs community however big or small. Working for an Organization that is dedicated to helping those in need, and also understanding what a special needs parent or caregiver challenges are on a daily basis is a blessing.
“Everybody can be great. Because anybody can serve. You don’t have to have a
college degree to serve. You don’t have to make your subject and your verb agrees to serve…. You don’t have to know the second theory of thermodynamics in physics to serve. You only need a heart full of grace. A soul generated by love.”
~Martin Luther King, Jr.
Katy’s passion for children and education is what drove her to join Bridge the Gap – SYNGAP Education and Research Foundation. She graduated from Texas A&M in 2009 with a degree in Math and Science Education and has been working at Aragon Middle School in Cypress, Texas for 6 years.
Katy is a member of Delta Kappa Gamma, a professional organization for educators whose goal is to make a difference in the community and provide scholarships for other future educators.
In her free time, you can find her outdoors with her husband – hiking or camping – and is the mother of a precious little girl and boy! She is very excited to have the chance to make a difference by serving as Secretary and raising awareness for such a great cause.
Member at Large – Family Advisory Council Chair
JoJo and her husband, Jesse, were overjoyed when their daughter Jadyn was born on November 1, 2012. A few months later they learned that their precious daughter was not developing as quickly as she should be. Their mission started right then on how to get the best care and help for their little girl. By the time Jadyn was 3 they finally had an answer. She had the SynGap1 gene mutation. The family then found their place of hope with Bridge the Gap SYNGAP.
Jesse’s family are the owners of Double J Saddlery, a leather business since 1991. They pride themselves on making quality American made leather products ranging from saddles to belts and handbags. Double J Saddlery has made it a mission of theirs to do all they can to raise funds and sponsor events that help push forward with research for SynGap1.
JoJo is a graduate of Texas State University with a Master’s in Education. She taught elementary school for 10 years before switching careers to sales with Double J Saddlery, which has allowed her more time to take Jadyn to therapies.
In May of 2014 Jadyn was joined by a little brother named Jase. The family enjoys living in the country and spending time salt water fishing. The DeBord’s are proud of their daughter and how hard she fights to overcome her difficulties. She is an inspiration.
Meet Our Advisory Board
Our Advisory Board helps facilitate funding opportunities, aids in medical education support and legislative initiatives.
Medical and Regulatory Adviser
Victoria Buchanan is a Clinical Nurse Consultant with the PULSE + PlusTM program at Partner Re. Victoria is a healthcare veteran with more than 20 years’ experience spanning all populations including managed care for Medicare, Medicaid, Commercial and Stop-loss payers. Prior to joining Partner Re, Victoria worked for Humana for over 10 years. Victoria has experience managing catastrophic adult and pediatric cases including Oncology, Congenital Heart Disease, Transplant, and rare diseases. Victoria is an industry expert in healthcare trends, cost containment, and strategic planning. Victoria holds an MBA from Mid America Nazarene University and Bachelor of Science in Nursing from Langston University as well as certification in Case Management.
Victoria also has a 17-year-old son who has a very rare de novo micro-deletion (6p22.1-6p21.33), which includes the SYNGAP1 gene. Victoria is a member of the Bridge the Gap SYNGAP Education and Research Foundation whose primary goal is to spread awareness and research to bring treatment options to the 250+ patients with this rare disease.
Scientific Family Registry Charter Co-Chair
Joshua works for the United States Census Bureau as a Federal Statistian researching survey methods for population data. He holds a BS in Mathematics, University of Southern Indiana, 2011 (magna cum laude) and MS in Statistical Science Survey Methodology, University of Maryland, 2015. His son was diagnosed with SYNGAP1 in late 2018. He will serve the SYNGAP community through strategically developing and supporting surveys and statistical analysis for our SYNGAP1 (MRD5) Registry and Natural History Study.
Shaowen (Sarah) Ju
Scientific Liaison and Family Council Advisor
Shaowen (Sarah) Ju is a former researcher of SynGAP at the Huganir Lab of the Johns Hopkins University School of Medicine. In the laboratory, she worked on developing treatments for SYNGAP1-related disorders by targeting SYNGAP2, a natural antisense transcript of SYNGAP1 found in human. She also saw SYNGAP1 patients by shadowing Dr. Constance Smith-Hicks at the Kennedy Krieger Institute. She received the Honors Bachelor of Science in Neuroscience from Johns Hopkins University and was inducted into the Phi Beta Kappa honor society. She is interested in pursuing a medical degree to continue and expand on her studies of SYNGAP1 in medical school and beyond.
Deborah Walter, MPA
Corporate Advisory Council
Ms. Walter graduated from the University of Alberta in Canada and received a master’s degree In Public Administration from the University of Victoria in British Columbia. Her articles have appeared in several medical journals and in various reports. Since 2018 she has served as Senior Director, U.S. Public Policy and Government Affairs, for Greenwich Biosciences (GW), one of the first companies in the world to develop cannabis-derived medications as prescription products in adherence to modern scientific and regulatory standards for pharmaceutical products. She leads GW’s federal public policy and legislative efforts, as well as works with advocacy organizations across numerous therapeutic areas.
Prior to GW, Ms. Walter worked at Takeda Pharmaceuticals where she was heavily engaged in Medicare issues in both the regulatory and legislative arenas. She directed the company’s strategic policy engagement in coverage and insurance, market delivery and payment systems, and financing strategies, as well as employer risk-based sharing contracts.
During her tenure as a health economist with the Medicare Payment Advisory Commission (MedPAC), an independent federal body that advises the U.S. Congress on issues affecting the Medicare program, she analyzed Medicare policies affecting hospitals and skilled nursing facilities, and made recommendations for payment reforms to the Congress.
UK Patient Engagement Director
Melanie Battye is the mum to Saskia who has a diagnosis of Syngap1. Saskia was one of three children diagnosed in 2012 from the DDD (Dysphering Developmental Delay) study in the UK.
In 2012, Saskia was one of only 3 children in the UK and 16 in the world and was quite an isolating prospect. If you look at the Syngap1 journey over the last 7 years you can truly see how far as a community has come, and looking at that, you then ask yourself where will we be within the next 7 years?
Melanie is excited to embark on this new journey and chapter of her life with BTG, helping represent the families of the UK, raising awareness by promoting Syngap1, raising the needed funds for the UK research teams and families, and also unite the families of Syngap1 with social activities so that it reduces their feelings of isolation.
Business Development and Corporate Alliance
Mary Cobb is a passionate advocate of patients with rare diseases and the Principal of PatientVue, LLC, an advisory business established to forge patient-centric partnerships between patient groups and the life sciences industry to make a difference for the rare disease community. Integral to this business is a focus on guiding and empowering disease-specific patient groups and aligning key interests in partnership with the life sciences industry to achieve common goals.
Previously, Mary spent several years as Senior Vice President, Membership & Organizational Strategy at NORD (National Organization for Rare Disorders), the umbrella non-profit organization dedicated to education, advocacy, research, and patient services on behalf of the rare disease community. Mary was on the leadership team at NORD and led outreach to disease-specific patient advocacy organizations to build the membership community and help them deliver on their mission. She was instrumental in relationship-building to develop partnerships with key external stakeholders, including the pharma/biotech industry.
Prior to joining NORD, Mary has over 25 years of experience as a leader at global healthcare communications agencies in strategic planning, marketing, communications, and patient and professional medical education in conjunction with the biotech/pharma industry. Mary held senior positions at several global companies and was involved in establishing and serving as President and CEO of PACE, a healthcare communications agency within the Interpublic Group Network of healthcare companies.
Mary puts her passion for advocacy into action by serving on the Board of Directors of the Foundation for Sarcoidosis Research, a non-profit dedicated to improving the quality of life of people with this inflammatory disease which affects multiple organs in the body. After serving on the board of the Phelan-McDermid Syndrome Foundation, she continues as an Advisor to this foundation dedicated to accelerating research, providing family support, and raising awareness for this rare genetic condition associated with developmental disabilities.
Mary is also passionate about the arts and an advocate for the role of women in healthcare. She was a former President and Board Member of the Healthcare Business Women’s Association (HBA), a non-profit dedicated to furthering the advancement and impact of women in the business of healthcare and continues in an advisory capacity. She is currently on the Board of Trustees of MPAC, the Mayo Performing Arts Center in Morris County, NJ. She holds an MS degree in Organization Development from American University in Washington, DC.
Our Honorary Board has been established to honor those board members in good standing who have served and committed to building the vision and mission of Bridge the Gap – SYNGAP Education and Research Foundation.