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.”
Dr. Terry Jo Bichell, Executive Director of COMBINEDBrain stated, “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.”
COMBINEDBrain is, by definition, a consortium of patient-led foundations, working with the clinicians, researchers and pharmaceutical firms to develop treatments for their member disorders. The priorities and strategic plan for COMBINEDBrain is created by a consensus of all stakeholders, with patient advocates on equal footing with industry and academia.
The nonprofit is led by Dr. Terry Jo Bichell and the Board, which is comprised of representatives of patient-led foundations. Learn more at http://www.
About Terry Jo Bichell, PhD, MPH, Founder/Director of COMBINEDBrain:
Previously a midwife, Dr. Bichell earned a PhD in neuroscience from Vanderbilt University at age 56, with the goal of finding a cure for her son’s severe genetic disorder, Angelman syndrome. She was the founding director of the Angelman Biomarkers and Outcome Measures Alliance (A-BOM) and expanded that expertise to COMBINEDBrain to help other similar patient-led organizations prepare for treatments. She has appeared in The Atlantic and Vanderbilt Medicine Magazine and was profiled by Women’s Day.
About Amber Freed, Vice Chair of COMBINEDBrain:
Amber Freed is the founder of SLC6A1 Connect. Mrs. Freed has served in financial analysis roles, and in consumer equity research with Janus Henderson Investors, and was featured in the top selling book, “Shortcut to Prosperity.” Mrs. Freed is the mother of twins Maxwell and Riley. In 2018, Maxwell was diagnosed with a SLC6A1 mutation. Mrs. Freed received a 2019 RARE Champion of Hope Nomination through Global Genes and was recently featured in Buzzfeed, and People magazine.
About Mike Graglia, MBA, MA, Board Member of COMBINEDBrain:
Mike Graglia is Managing Director of the Syngap Research Fund. His son Tony who was diagnosed with a SYNGAP1 mutation in 2018. Mike comes from a career in public policy, international development and strategy. Previous roles have included serving as a Director at New America, Finance roles at both the Gates Foundation & Emerson Collective, healthcare consulting at BCG, tertiary education at the World Bank Group & running a refugee camp for the ICMC in Zimbabwe, after he taught math in Namibia as a Peace Corps Volunteer.
Bo Bigelow, Chairman and Co-Founder, Foundation for USP7 Related Diseases
Geraldine Bliss, President, cureSHANK Foundation
Jeff D’Angelo, Founder, CHAMP1 Research Foundation
Trish Flanagan, Co-Founder, Yellow Brick Road Project
Amber Freed, CEO and Co-Founder, SLC6A1 Connect
Allison Kaczenski, President and Founder, SATB2 Gene Foundation
Bina Maniar Shah, President and Founder, Project 8p
Liz Marfia-Ash, President and Founder, GRIN2B Foundation
Leah Schust Myers, Executive Director, FamilieSCN2A Foundation
Haley Oyler, President, SETBP1 Society
Kathryn Atchely, Foundation for KIF1A disorders
Dr. Kim Stephens, President, Project Alive
Dr. Nuala Summerfield, Founder, Schinzel-Giedion Syndrome Foundation
Charlene Son Rigby, President and Co-Founder, STXBP1 Disorders
Mike Graglia, Managing Director, SynGap Research Fund
Carlie Monnier, Board President, NR2F1 Foundation
Glenna Steele, Executive Director, Glut1 Deficiency Foundation
Sanath Kumar Ramesh, Founder, CureGPX4
Dr. Christal Delagrammatikas, Vice President, Malan Syndrome Foundation
Andrew Longenecker, President, PBD Project
Nasha Fitter, CEO and Head of Research, FOXG1 Research Foundation