OUR BOARD OF DIRECTORS
November of 2012, Monica’s twin boy, Beckett was the first to be diagnosed at Texas Children’s Genetics Clinic with the gene mutation SYNGAP1 (6p21.3). When Beckett was 4 months old they noticed he was not meeting the same milestones as his twin sister. It was then, Monica began to try to find answers to help her son. She started to blog about his progress and this led to building a group of parents and caregivers that are now a strong support group.
Monica’s passion is to help support these families by raising awareness and creating a strong Foundation. Her hope is that someday it will lead to therapies for those individuals suffering the neurological effects of SYNGAP mutations. To read more about Beckett’s journey follow the link to MY SPECIAL BOY.
Monica retired from teaching in 2016 to work full time in rare disease advocacy and to run the organization she began to support the SYNGAP1 community. 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 has been an educator for the last 23 years. She is married to Chris Weldon and has five beautiful children, Haleigh (24), Taylor, USMC (21), Sawyer (19), and the twins Beckett & Pyper (8), all who are her inspiration. Over the last four years she has worked and volunteered with Global Genes, a non-profit out of California who’s mission is to eliminate the challenges of ALL Rare Disease.
Board Member At Large
Christian Rubio is Vice President of Marketing and oversees all marketing activities across PlatformQ Health’s therapeutic areas, including branding, event marketing, content distribution and syndication, new user acquisition and learner engagement. Formerly the Global Director of Communities at SERMO, the world’s largest patient case crowdsourcing platform for physicians, he led expansion of the US-based network into Europe and Latin America. Key areas of focus today are on expanding the patient education and strategic partnerships wings of PlatformQ Health, along with syndicating the thousands of hours of expert-led programs into new platforms and markets.
Before entering into health media, Christian oversaw engagement and member operations for the massive multiplayer and social platform Moco – the 11th most downloaded app of all time in the Google Play marketplace – and GrabCAD, a crowd collaboration platform for engineering design (acquired in 2014).
A graduate of Williams College and holding 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.
After searching for years for the cause to their son Remi’s autism, Nicole and her husband Christophe were relieved to finally have the answer, but heartbroken that there was not a treatment available. When a chance came for Nicole to participate as treasurer of the Bridge the Gap SYNGAP Foundation and help make a difference for kids and families affected, as well as help her son’s cause, she eagerly accepted.
Nicole and her husband Christophe are Owners of Econocuts Landscape Management, a commercial and residential landscape company in the Houston Area. Prior to becoming business owners this past year, Nicole was Chief Financial Officer for McLarney Construction, Inc., a general contractor specializing in commercial office tenant improvement work in San Jose, California. She spent ten years in that role managing all aspects of the company’s accounting and financial forecasting. Prior to that she worked for Equity Office Properties REIT as Director of Regional Finance, Gap, Inc. as Manager of Planning and Portfolio Analysis in their IT Finance Department, and United States Gypsum Company as a corporate engineer and then Manager of Project Controls for their capital expansion program.
Nicole holds a BS in Industrial Engineering from Northwestern University (1995) and an MBA in Finance and Management from Northwestern University’s Kellogg School of Business (2002).
Nicole spends what free time she has left with her husband Christophe, and their three kids, Chloe (21), Christophe (12) and Remi (10).
Board Member At Large
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.
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! She is very excited to have the chance to make a difference by serving as Secretary and raising awareness for such a great cause.
Board Member At Large
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. Her valuable knowledge on 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.
Constance Smith-Hicks, MD PhD
Board Member At Large
Kennedy Krieger Institute/Johns Hopkins University School of Medicine
Dr. Smith-Hicks is an Assistant Professor in the Division of Neurology and Developmental Medicine at Kennedy Krieger Institute. She received her MD and PhD from Columbia University College of Physicians and Surgeons and completed post graduate training in Neurpost-graduateroscience at Johns Hopkins University School of Medicine. She is the Medical Director for the Center for Autism and Related Disorders and co-directs the Rett Syndrome clinic and directs the newly established SYNGAP clinic at the Institute. Her research interest includes behavioral phenotyping and biomarker identification.