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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 wor
KCUR
Kim and Nate Fry of Kansas City, Missouri, are raising money to fund research on a treatment for a rare genetic disorder that affects their son, Charlie.
The growing trend of family-funded research concerns some medical ethicists, who say that suggestions to parents that treatments may be imminent can raise thorny ethical issues.
Over the last several years, parents from across the country have appeared on television and news outlets to raise money to develop treatments for their children with rare genetic disorders.
Many of these families, including one from Kansas City, Missouri, have pinned their hopes on one Texas researcher, Dr. Steven Gray of the University of Texas Southwestern Medical Center in Dallas, who claims to be on the verge of treating a number of rare conditions. They ve raised millions of dollars to fund his research, although breakthroughs haven t happened to the extent many had hoped.
Originally published on January 25, 2021 11:40 am
Over the last several years, parents from across the country have appeared on television and news outlets to raise money to develop treatments for their children with rare genetic disorders.
Many of these families, including one from Kansas City, Missouri, have pinned their hopes on one Texas researcher, Dr. Steven Gray of the University of Texas Southwestern Medical Center in Dallas, who claims to be on the verge of treating a number of rare conditions. They ve raised millions of dollars to fund his research, although breakthroughs haven t happened to the extent many had hoped.
While gene therapy holds great promise, the growing trend of family-funded research concerns some medical ethicists, who say that suggestions to parents that treatments may be imminent can raise thorny ethical issues.
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