Bridge the Gap – SYNGAP – Education and Research Foundation

OUR BOARD OF DIRECTORS

Monica Weldon

President/CEO/Founder
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.

Nicole Merriam

Chairwoman/Treasurer

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).

Katy 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! She is very excited to have the chance to make a difference by serving as Secretary and raising awareness for such a great cause.

Candace Lerman

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.

Advisory Board

Christian Rubio

Advisory Board Director

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.

Ahmed Fadili

Advisory Board Director

Ahmed will serve as the Chairman of Development and Webmaster.  Ahmed is a proud participant on the board of Bridge The Gap – SYNGAP. As the father of a child with a Syngap mutation, his young son is unable to walk, non-verbal and Autistic, making Ahmed extremely invested in this cause. Ahmed assists the organization with all of its technology needs, as he has extensive experience in the field and holds the position as VP of Information Technology at an IT services firm in Boston. Passionate about the cause, Ahmed also participates in many events each year, such as Tough Mudder obstacle runs to raise money and awareness for Syngap mutation. 
We are thrilled to have him on board. His valuable experience will help us in our mission to create awareness and create tools to better drive development. His added value will accelerate and continue our mission by furthering the hope for our patient community.

Babak Benham; PhD, MD

Advisory Board Director

Dr. Babak Behnam lived all his life in an atmosphere of medical educational and scientific research, either in academic centers, or in its affiliated laboratories and hospitals. First, he did a Medical Degree at IUMS (Iran) followed by a MSc in Molecular Medicine in Sheffield University (Sheffield, UK). Then he did his PhD in Human Genetics at University College London (London, UK), followed by a NIH-based (NRSA) postdoctoral fellowship in the University of Michigan (Ann Arbor, USA). His work experiences consist of serving as university faculty member and lectureship in medical genetics and molecular biology, translational and medical genetics research, practicing clinical genetics, and directorship of genetic diagnostic laboratories at IUMS-Children/OBG hospitals. After serving as faculty membership for couple of years, Babak completed his fellowship in Clinical Biochemical Genetics at National Institute of Health (NIH). He has recently been graduated as a board-eligible fellow from this prestigious training program which is accredited by American Board of Medical Genetics and Genomics (ABMGG).

This mixture of translational research and clinical genetics by Babak, has made it as an exciting and interesting combination. These combinations would also be so much helpful in defining world class research in medical genetics and molecular biology. In parallel and during his clinical genetics fellowship, he has been doing some translational researches in the UDP program at NHGRI/NIH for patients with Undiagnosed and Rare diseases. His research in the past 10 years has been focused on translational research on undiagnosed, biology of cancer metastasis, and ethnic-specific genetic variations in rare genetic diseases.

He has published more than 50 peer-reviewed papers and is also serving as an Editorial Board Member of some scientific journals.

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