Glycogen Storage Disease Type 1b
Sophie’s Hope Foundation is 100% volunteer run and our team is 100% volunteer based. No one on our board receives compensation of any kind for their work. This is truly a passion for everyone.
Jamas LaFreniere – Founder, President, and Sophie’s Dad
Jamas started Sophie’s Hope Foundation with his wife Margot within months of their youngest daughter Sophie being diagnosed with GSD1b. Jamas is a graduate of Babson College with a BA in Business Management and Entrepreneurship. He has spent his entire professional career in technology sales with EMC and now Dell. Jamas’ passion to cure his daughter is the driving force behind Sophie’s Hope Foundation. Jamas has also been instrumental in bringing collaboration and organization to the GSD1b research community and created the CureGSD1b Research Alliance, where he also serves as President and Founding member. His passion to cure his daughter has also made him a powerful voice in the rare disease community. Jamas runs all day to day operations for the foundation. Jamas lives with his amazing wife Margot and their two beautiful daughters, Ali and Sophie in Hopkinton, MA.
Margot LaFreniere – Board Member, Patient Advocacy Leader, and Sophie’s Mom
Margot was instrumental in helping and pushing her husband to start the Sophie’s Hope Foundation. She was even more instrumental in pushing doctors for a quick diagnosis for Sophie and has been her biggest advocate from day one. Margot’s number one focus is on Sophie’s health and navigating her care, but she is also incredibly valuable to Sophie’s Hope Foundation. She graduated from UMass Amherst and is an RN at Dana Farber Cancer Institute in Boston, MA. Margot got into nursing to help people and is a fierce advocate for her patients. Her education and career in nursing makes her a huge boost for our team. Her ability to advocate for her patients and for Sophie will make her an even better advocate for Sophie and other GSD1b patients. She resides in Hopkinton, MA with her husband Jamas and their two wonderful daughters.
Dr. Walla Al-Hertani – Medical Advisor
Dr. Al-Hertani is a Clinical Geneticist and a Medical Biochemical Geneticist with expertise and interest in inborn errors of metabolism (IEMs) and targeted therapeutics for these IEMs Dr. Al-Hertani is currently an Attending in Genetics and Metabolism at the Boston Children’s Hospital and is the Director of the Boston Children’s Hospital Lysosomal Storage disease (BoLD) program. Most importantly to us Dr. Al-Hertani has agreed to be an advisor to Sophie’s Hope Foundation and will help provide us with guidance around clinical care and research for GSD1b. She has recently started seeing a large population of GSD patients, many of whom were previously cared for by Dr. Weinstein prior to his departure from medicine. Dr Al-Hertani will be a critical resource and advisor for our board. She is also Sophie’s GSD doctor so shares that same passion to help find a cure for Sophie and all her other patients with GSD1b.
Joseph Barberio – Board Member and Chief Scientist
Joe is Jamas’ best friend of over 30 years and just so happens to be uniquely positioned and qualified to help find a cure for his daughter. Joe is a graduate of Connecticut College where he graduated cum laude and earned his BA in Biochemistry, Cellular and Molecular Biology. Currently, Joe is the Director of mRNA Process Development at Strand Therapeutics in Cambridge, MA. Over his 15 + year career in the biotech industry Joe has also held strategic positions at Moderna, Percivia, and Bluebird Bio among others. Joe’s understanding of science and specifically how companies bring drugs to market for rare diseases will be an invaluable part of our foundation’s mission. Joe will be relied on to bridge the gap between research and drug development and help guide us into making proper investments in research projects. His network in the bio-tech space will be critical as we navigate the difficulties of trying to cure a rare disease. Most importantly Joe has a passion for helping people through science and specifically finding a cure for Sophie and others with GSD1b.
George Ganzenmuller – Board Member
Papa George as Sophie calls him, is a Fordham University graduate, where he graduated with a Communications degree. George has held many sales leadership positions during his impressive 40-year professional career in the consumer products space. He is a proud husband, father of three, and papa to two. George will be retiring in 2021 and keeping himself busy raising money and trying to find a cure for his granddaughter, Sophie. He brings an incredible network and leadership skills to Sophie’s Hope Foundation. George lives in Mashpee, MA with his wife Marianne and when not fundraising he can probably be found fishing or golfing.
Christopher Belton – Board Member
Chris is Sophie’s uncle and transplant from California. He has spent most of his career in the hospitality industry mostly in hotel sales and management, where he has spent time in Italy and New York City, but most recently has settled down with his family in Massachusetts. Chris brings an incredible attitude and operational excellence to our board. Chris will be a major asset in our fundraising efforts, but also shines during events when his poise and operational excellence are on display. Chris has a shared passion to help us find a cure for Sophie and others with GSD1b. He lives in Grafton, MA with his wonderful wife Jessica and three beautiful girls. The entire Belton family is an asset to Sophie’s Hope Foundation, and we are grateful to have them.
Brett Adamczyk – Board Member
Brett is a college friend and hockey teammate of Jamas’s. He graduated cum laude from Babson College with a concentration in finance and applied statistics. Brett is an operating executive and investment professional spending most of his career in the financial services and technology industry. Brett is currently serving as an operating partner to Apollo Global Management leading corporate development for portfolio company Cox Media Group. Brett brings operation and financial excellence to our team, as well as a passion to help find a cure for Sophie and others with GSD1b. Brett lives in Westwood, MA with his wife and two boys.