The ALSF CORD Fund

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ALSF CORD Fund History

The ALSF CORD Fund originated from the CORD Foundation, an organization founded by Dan and Kara Heck to fund spinal cord tumor research after their daughter Malia was diagnosed with the disease.

In 2002, Dan and Kara’s 2-year-old daughter Malia was diagnosed with a rare childhood disease called “intramedullary astrocytoma” (spinal cord tumors). Dan and Kara discovered that traditional treatments for spinal cord tumors have severe limitations and present potentially devastating risks. In addition, due to the relative rareness of the disease, research to find a cure is grossly underfunded.

In 2004, Malia’s CORD Foundation was founded; CORD being an acronym for a Cure for Others through Research and Development. This non-profit charitable organization existed solely to fund and accelerate medical research to find a cure for spinal cord tumors. Four other families joined the Hecks by creating CORD Foundation chapters within their own communities. Kennedy Snyder’s family in Wilton, CT created Kennedy’s CORD; Nichole Silversteen’s family and friends in Philadelphia, PA created Nichole’s CORD; Steven McDonough’s family in St. Louis, MO created Steven’s CORD; and Wyatt Fuss’s family in Grand Rapids, MI created Wyatt’s CORD.

In 2005, Malia’s CORD Foundation began funding the work of Dr. George Jallo at Johns Hopkins Medical Center. In 2006, Drs. Bernie Maria and Bryan Toole, of the Medical University of South Carolina began work on a radical new treatment that was solely funded by Malia’s CORD Foundation.

In 2008, Malia’s CORD began competitive grant awards of $300,000, 3-year grants. Per the recommendation of the Scientific Advisory Committee, The Nichole Silversteen Research Chair was awarded to Dr. Jane Johnson of University of Texas Southwestern, and The Harold C. Schott Research Chair was awarded to Dr. Richard Gilbertson of St. Jude Children’s Research Hospital. In 2009, The Kennedy Snyder Research Chair was awarded to Dr. Shanthini Sockanathan of Johns Hopkins University School of Medicine. In 2011, The Demetri Demeropoulos Research Chair was awarded to Dr. George Jallo of Johns Hopkins Medical Center.

In an effort to leverage The CORD Foundation’s success and maximize their impact, The CORD Foundation dissolved on October 17, 2013 and became a named fund under Alex’s Lemonade Stand Foundation (ALSF) called the ALSF CORD Fund. The ALSF CORD Fund continues to restrict its donations to spinal cord tumor research in an effort to find better treatments and cures for all children with spinal cord tumors.