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.
Monica Weldon President/CEO/Founder
In November of 2012, Monica’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).
Candace Gross Taylor Treasurer
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.
Katelyn Kennedy Secretary
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.
Derek Gavin - Member at Large - Corporate Council Chair
For the past 25 years, I have been committed to advocating on behalf of rare disease patients, first for my son Trevor who lost his battle with MLD and now for the millions of families affected by rare diseases. I know the pain and uncertainty these families face because I have been there. I also know the members of industry and the regulators who are making the decisions that will directly affect these patients lives. Six years ago, I made a decision to make advocacy and work on behalf of patients my life’s work. I have worked with pharmaceutical companies. I have worked with the FDA, and I know how to design and implement a patient advocacy program that engages all stakeholders and leads to the best possible outcomes for patients and their families. Now I will focus my attention on bringing affordable, quality genetic testing to mainstream America working with Invitae.
Jojo DeBord 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.
Candace Lerman Esq. Member at Large - Legal Council
Candace Lerman is a healthcare policy consultant and rare disease advocate from Fort Lauderdale, FL. She earned her Juris Doctorate with
a concentration in Health Law at the Shepard Broad School of Law at Nova Southeastern University and a certificate in Healthcare Compliance from Seton Hall University School of Law. Candace is sitting for the February 2018 Florida Bar exam. In addition, she holds a Bachelor’s and Master’s degree in International Affairs from Florida State University. A rare disease patient, Candace researched and repurposed a drug to put her rare blood disorder
into remission. Candace is the face of HR 1223, the OPEN Act, and has been heavily involved in legislation to increase funding for biomedical research while reducing regulatory burdens on new drug development. We are thrilled to have her on board. Her valuable knowledge of the regulatory and legislative policy will help us plan for the future for SYNGAP1 treatments. Her added value will accelerate and continue our mission by furthering the hope for our patient community.
Christian Rubio Member at Large - Development and Strategic Planning Chair
A veteran of the Boston mobile-social tech start-up scene before focusing his experience to accelerate health outcomes, Christian has spent the last decade driving mass adoption of emerging technologies like social networks, mobile apps, and online crowdsourcing platforms. An early designer of user experiences and expert on online community engagement, Christian has been building engagement strategies since his offline work of issue advocacy and community projects funded by development agencies in Washington, DC. Formerly the Global Director of Communities at SERMO, the world’s largest patient case crowdsourcing platform for physicians, he led the expansion of the US-based network into Europe and Latin America. His former job focused on distributing online continuing education by building the “Netflix for Healthcare” at PlatformQ Health, including partnering with disease-specific and other patient advocacy organizations to help them fulfill their missions of improving the research, education, and, more recently, expanding the known patient populations of their respective diseases for awareness campaigns and clinical trial recruitment. He now works as a Digital Education Coordinator with Global Genes.
A graduate of Williams College and holds an MBA from the F.W. Olin Graduate School of Business, Christian advises aspiring Latino entrepreneurs and various health sector non-profits in their digital engagement, marketing, and technology strategies.
Meet Our Advisory Board
Our Advisory Board helps facilitate funding opportunities, aids in medical education support and legislative initiatives.
Victoria Buchanan - 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.
Melanie Battye - 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.
Leslie Baldwin-Ruthven Grant Writer
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.
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.