CMTRF Receives $1 Million Research Grant from Grandview Steers Foundation

The pace of research for CMT just got faster.

Atlanta (November 8, 2018) The newly launched CMT Research Foundation (CMTRF), the only 501(c)(3) not-for-profit organization focused solely on delivering treatments and cures for Charcot-Marie-Tooth, has received a research grant of $1 million from the Grandview Steers Foundation. The 17 year-old, Rye, NY-based foundation is run by Lauren and Bob Steers and has focused its giving primarily around education and medical research.

Patrick Livney and Susan Ruediger, who have over 20 years of collective experience working with CMT research, launched CMTRF in September to develop partnerships with researchers, pharmaceutical and biotechnology professionals to help find a cure for CMT which they both have.

CMT is a progressive genetic nerve disease and can lead to severe disability or even death. CMT has over 90 known genetic causes and can be passed down in multiple generations. Onset can be at birth or later in life and is characterized by loss of muscles and sensation in the feet, hands, legs and arms. Nearly three million people of every age, race and ethnicity are living with CMT. Currently there is no cure for CMT; and there are not any effective treatments.

“There are many promising treatments in the pipeline that could one day end CMT,” says Ms. Steers, a co-trustee of the Grandview Steers Foundation. “If this grant will shorten that process by even one day, it will be money well invested. Nobody is better at identifying the shortest route to that day without CMT than Pat and Susan. They deserve everyone’s support.”

The Foundation is also participating in an ongoing CMTRF challenge grant where every dollar up to $110,000 will be matched.  

“We are grateful for the generous support of the Steers and their Foundation,” says Mr. Livney. “Research is what it takes to develop effective treatments and ultimately a cure for CMT and the only thing standing in the way of that research is funding. As a patient living with CMT every day, I know firsthand how urgent it is that we eliminate this devastating condition and CMTRF won’t stop until there is a cure.”

Grandview Steers Foundation, founded in 2001 by Lauren and Robert Steers, makes about 20 grants each year. Among those receiving major support have been the Canterbury School, San Miguel Academy, a middle school for boys from underserved families in Newburgh, NY, the McDonough School of Business at Georgetown University and Elon University.

The CMT Research Foundation (CMTRF) is the only organization focused solely on delivering treatments and cures for CMT. Founded by two patients who are driven to expedite drug delivery to people who live with CMT globally, the organization funds research and drug development. The 501(c)(3) federal tax-exempt organization is supported by personal and corporate financial gifts.