Established in 2019 in Nashville, COMBINEDBrain is a non-profit consortium of patient advocacy groups, researchers and clinicians working together to fast-track cures and therapies for individuals afflicted with rare genetic neurodevelopmental disorders.
Established in 2017, the Marlene and Spencer Hays Foundation has a mission to support efforts to improve peoples' lives through the arts; research and innovations in health care; education and programs to help at-risk youth; and to promote enhanced economic achievement by encouraging discipline, ambition and commitment to goals and principles.
Fulfilling the goal of promoting innovations in health care, The Marlene and Spencer Hays Foundation awarded COMBINEDBrain a grant of $68,000 which will be used for operating expenses to support 21 patient advocacy organizations prepare for clinical trials. Each of these member organizations is run by dedicated parents, seeking solutions for their children and others around the world. Together, they represent more than 5,000 families of children with severe intellectual disabilities. "When my 3 year-old son, Maxwell, was diagnosed with SLC6A1, I had no clue what to do. COMBINEDBrain has played an essential role in helping us develop a life changing therapy," stated Amber Freed, CEO and Co-founder of SLC61A1 Connect.
To de-risk the drug development process, there is much that patient-led foundations can do to spur research and investment, but parents like Mike Graglia, board member and Managing Director of Syngap Research Fund, have to find experts or gain expertise at the same time they are caring for medically complicated children. Mike Graglia says, "We've spent the last 14 months establishing the groundwork for COMBINEDBrain's future work. The work of COMBINEDBrain will be life-changing for so many families. We are beyond grateful for the financial investment we're beginning to see in COMBINEDBrain."
This grant from the Hays Foundation is a life-saver. Literally. It will help pay for the non-glamorous parts of the budget that are hard to fund - the operating expenses. With this grant, we can free up money to bring in more researchers, and researchers are what we need to find the data which will catalyze our members' pathways to cures."
Dr. Terry Jo Bichell, Executive Director of COMBINEDBrain