Breaking down silos and expanding collaboration
Denise Rehner and Keith McArthur co-lead the CureGRIN Foundation. They are both parents of children with GRIN Disorders who have dedicated their lives to finding therapies and cures for those affected. Both Keith and Denise believe that patients hold the power to accelerate research and drive progress, and that a cure for GRIN Disorders is possible.
GRIN Disorders are rare genetic conditions that affect one of seven GRIN genes and have serious life-limiting consequences. Most GRIN patients have developmental delays, including severe intellectual and physical disabilities. There’s no cure and no FDA-approved GRIN-specific therapies. Current treatment options exist only for managing symptoms such as controlling seizures, or therapies to increase strength and function.
In 2019, the CureGRIN team organized a GRIN family conference with some of the world’s top researchers. Participation in the Rare As One Network will allow CureGRIN to build their research network, turbocharge awareness of GRIN Disorders, and attract new researchers to its cause. Creating a collaborative research network will enable the sharing of ideas and valuable information that will allow CureGRIN to achieve more together.
“Patients hold the power to accelerate research and drive progress.”