– President : Solenne Lafeytaud.
Solenne is Côme’s mother.
Working for more than 15 years in communication and CSR projects, she is a strong believer that hard work, passion and creativity can overcome any obstacle. With this foundation, she wants to raise awareness on this rare disease and hopefully find a cure that would benefit the future generations. Proud mother of 4, she is dedicated to her family well-being and happiness. Creating this foundation means the world to her.
– Vice-President : Domitille Marchal Lemoine.
Domitille is Côme’s aunt and works as a consultant.
With a comprehensive experience in communication for non-profit organizations and big companies, she wants to use her skills to make a difference and support as much as possible research on SYNGAP1: she knows that every dollar raised is useful and wishes to move mountains to help find a cure! A mother of 3, she lives in New York.
– Secretary : Celine Chabee.
Pharmacist and certified coach, Celine is convinced that constructive and motivating health promotion is based on pertinent education, support and partnership with patients. She has been dedicated to self-management and professional services programs that work in that way. Today, as a mother and a friend, she feels blessed to be part of a project that can make a difference in the life of this little boy that she loves, support her friends in any manners and make a difference in SYNGAP1 research.
– Treasurer : Bruno Lafeytaud.
Bruno has been working in Consulting for the last 18 years, inspired by the opportunity to make the world run better. He likes to say that his son, Côme, has offered him a chance to open his eyes on an unknown part of the society that deserves way more attention and support.
This foundation is a great chance to make a difference, to offer hope to parents, a future to children and support to physicians and researchers who fight every day to make the science progress. The objective is also to improve the ability to diagnose SYNGAP1 and help parents to put a name on the unknown.
– Treasurer : Benoît Marchal.
Benoît is a young dynamic and ambitious fresh graduate of a business school in Montreal. Being a cousin of Solenne, he is close to the family and has seen Côme grow over time.
Having been a part of a competitive sports teams most of his life, he has a developed a strong team spirit and a great determination.
Intrigued by the SYNGAP1 disease and with some experience in business development and customer service, he wants to bring his salt grit to the foundation by contributing as much as possible to its expansion.
– Communications : Anne-Laure Lapeyraque.
Anne Laure is a nephrologist at the Centre Hospitalier Universitaire Sainte-Justine. She completed a fellowship in Pediatric Nephrology from 1997 to 2001 at the Robert Debré Hospital in Paris, and there began her practice in pediatric nephrology in 2001. She practices in Quebec since September 2005. A close friend of Côme’s family, she is currently monitoring his kidney stones, due to the ketogenic diet. She firmly believes that research is the engine of major advances in medicine, and therefore decided to join the foundation.
– Events : Alexandra Guillaux.
Alexandra is a mother of 3 and works in consulting. She had the chance to meet Côme and his parents while he was only a few months old.
That’s therefore for him, his parents and all families impacted by genetic diseases that she wants to be an active part of this foundation.
She hopes Research can advance more quickly in order to bring to many kids better opportunities and perspectives for their future.