Meet our Board of Directors
SHINE Syndrome Foundation was formed to represent and fight for the global DLG4 Synaptopathy community. The board has worked hard to organize medical resources and plan with researchers, develop patient registries, raise funding for research, and drive awareness of SHINE Syndrome among the medical community as well as in the general public. Aside from SHINE Syndrome activities, our board members balance caring for their SHINE children and families, professional lives, and other responsibilities. Take a minute to learn about each of our dedicated members, and reach out or look for us on social media.
Marie-France Gervais -President
Marie-France “Mara” Gervais, is a stay-at-home mom to her SHINE son Cédric. A language teacher by trade and a member in good standing of the Ontario College of Teachers, she earned a Bachelor’s degree in English from l’Université Lumière Lyon 2, as well as a Bachelor’s degree in Linguistics and Second Language Teaching, a Bachelor’s in Education, and a Master’s degree in Education all from The University of Ottawa. Originally from France, she lives in Ottawa with her husband Dave, her son Cédric, and their dog Freya. One of the original members of the foundation, Mara helped develop the CoRDS patient registry and hosts the monthly “Wine and SHINE” parent group. She has also actively participated fundraising efforts and is eager and thankful for any opportunity to raise awareness, facilitate research, and foster a sense of community for SHINE Syndrome around the world.
Timothy J. Stuart - President
Tim resides in Connecticut with his wife Tracy, son Travis, and daughter Lilia who was diagnosed with SHINE Syndrome in 2020. A 25-year career veteran of the Louis Dreyfus Group, Tim began merchandising wheat, then corn, grain sorghum, and then in 1989 was made head of North American soybean trading for LD. In 1991, Tim joined LD Energy where he co-founded in Singapore as Head of Trading Louis Dreyfus Energy Asia-Pacific Pte. Ltd., a global physical energy merchandising business. In 1997, he returned to the US and founded and was President of Louis Dreyfus Energy Services which after rapid growth became Louis Dreyfus Highbridge Energy in 2006 with a minority joint-venture investment by JPMorgan Chase. Tim has a BA in Economics and Politics from Washington and Lee University and an MA in International Relations/Business from Syracuse University. He was a member of the U.S. Peace Corps after college. He was President and then Chairman of Shepherds, Inc. from 2001-2022 which sponsors and mentors inner-city high school students in Connecticut and he remains on that board today and committed to providing educational opportunities to the least advantaged in our communities. He has served multiple terms as Chairman of the Trustees and sits on the endowment investment committee of the Southport Congregational Church.
Justin Neduchal - Vice President/Ethics Officer
Justin Neduchal has over 16 years of experience in Human Resources and currently serves as a HR Senior Manager at a global security and aerospace company. Justin earned his Bachelor’s degree in Business Administration from Flagler College and a Master’s degree in Human Resources and Employee Relations from Penn State University. He lives in northern Kentucky with his wife Jenna, and their two children, Jovie and Jace. His son Jace was diagnosed with SHINE Syndrome in December 2021 and his family is relatively new to the SHINE community. He is proud of the work that has already been completed since the foundation was established and is looking forward to assisting in any way possible to build awareness and raise funds to aid in the research of SHINE Syndrome.
Payal Patel – Vice President of Development
Payal Patel is a mom to two beautiful girls and resides with her family of four in Allen, TX. She had 15 years of experience working in Finance and has graduated with a Financial Analyst degree from Southern Methodist University in Dallas, TX. After her daughter Rayna, was diagnosed with SHINE Syndrome in 2022, she founded DLG4 Research Fund with the main goal to fund groundbreaking research and therapies that would help patients with DLG4 Related Synaptopathy. She was instrumental in networking with the greater Rare Disease Community and bringing world class researchers to the table to work on DLG4 Research Fund in the United States. She was also able to add valuable Scientific Advisory Board members and raise over 300K since the inception of DLG4 Research Fund. As a board member for SHINE Syndrome she hopes to raise funds to further research for SHINE Syndrome, get more research underway and network within the rare disease community to bring opportunities for everyone affected by this terrible disease.
Courtney Roche - Secretary
Courtney Roche is a School Psychologist/Behavior Consultant and mom of three boys. She received her Bachelor’s degree in Elementary Education and Psychology from Hofstra University followed by a Masters in School Psychology from Adelphi University and is also a Board Certified Behavior Analyst. Over the past few years Courtney’s career has shifted to part time behavioral consultation and family training while she focuses on her eldest son Noah who was diagnosed with SHINE syndrome in June 2020. Courtney is proud to be one of the founding members of the SHINE Syndrome Foundation and is involved with a wide range of foundation work including developing the CoRDS patient registry and hosting the monthly “Wine and SHINE” parent group, both in collaboration with Marie-France. She is extremely proud of the work this young foundation has accomplished and is honored to be part of its growth!
Melanie - Treasurer
Melanie is an accountant and mother of three children, two boys and one girl. She received her Bachelor's degree in Accounting from Brigham Young University-Idaho and owns her own accounting firm. She has served on the board of a few other non-profit organizations. While in High School and College, Melanie was a member and officer of Business Professionals of America for five years and for one year was the Idaho Post Secondary Secretary. When her daughter was diagnosed with SHINE Syndrome she was quick to want to help the board with financials and fundraising. She has been amazed at how quickly the organization has been able to get things done and is more than happy to help in any way possible.
Sabrina Merchant, MD Director of Science and Clinical Development
Sabrina resides in Austin, TX, alongside her husband Kevin, their daughter Zara, and their son Adnan, who was diagnosed with SHINE Syndrome in 2022. With over 15 years of experience, Sabrina is a Board-Certified emergency medicine physician. She obtained her Doctor of Medicine degree from the University of Illinois and completed her residency training at Kern Medical Center. Prior to her current position at Baylor, Scott and White Health System in Austin, TX, she practiced for over a decade at Kaiser Permanente in Northern California, where she actively participated in hospital-wide quality improvement initiatives. Sabrina's professional journey includes serving as the Science Director for the DLG4 Research Fund from 2023 to 2024, overseeing the research program for DLG4 gene therapy. She is enthusiastic about coordinating community efforts to advance scientific research and clinical programs for the SHINE Syndrome Foundation.
Coutney Thomson - Director of Patient and Family Engagement
Courtney Thomson is happily married and a proud mother of two beautiful children. In 2020, her family received some news that has changed their lives. they discovered that their son has a DLG 4 gene mutation.Her family made the decision to move from the coast to embark on this new journey with their children. It has been an exceptional adjustment, filled with both challenges and moments of joy. Throughout this process, they have learned to cherish each day and be grateful for the life they have been given.She excited to join the Shine Syndrome Foundation. It is a role that she is eager to take on, as it allows her to reach out to new families like hers, offering support, understanding, and a helping hand. She believes that every family deserves to feel empowered and uplifted, especially when facing unique challenges. Through her involvement with Shine, she hopes to create a supportive and inclusive community where families can connect, share their experiences, and find the resources they need. She is passionate about making a positive impact and spreading awareness about conditions like DLG 4/SHINE Syndrome and othersShe is truly looking forward to this new chapter with SHINE and the opportunity to connect with all families, offering a listening ear, guidance, and a source of comfort. Together, we can navigate this journey with strength, resilience, and a sense of unity and she is thankful to be able to be a part of this amazing community.
