The "CORD Foundation's" mission is to find a cure for spinal cord tumors. The foundation tries to raise awareness of this rare disease and now has begun to sponsor medical research for a cure. The following is an interview with Marie Crane, president of Nichole's Cord Foundation, one of the chapters of the organization. The chapter was named after Nichole from Philadelphia, a 23-year-old who died from a spinal cord tumor in 2005.

Tell us about your motivation to start a chapter of the CORD Foundation named after Nichole.

For us, our chapter is a large part of the healing process. I don’t think you ever get over the loss of a loved one, but there is something exceptionally heart-wrenching about seeing a young person with so much promise deteriorate. Nichole was my best friend since grade school and there was a big space to fill in her absence. Her mother is the one who shared with me the mission of the Malia’s CORD Foundation. We saw how much hope there was to treat spinal cord tumors (SCTs) if they were detected early enough. A bunch of friends of Nichole met and decided we wanted to fill that place in our heart with some good work in Nichole’s name. At that point, Malia and Kennedy’s chapters were the only existing chapters and we all pretty much fell in love when we saw them. When we realized we had the power to raise awareness and generate funds that is going to keep people from experiencing the pain we felt, we knew we could take the energy grieving takes and redirect it in a way that would really honor Nichole and make her proud.

Nichole recently had a medical research project named in her honor. Talk about that project and its significance.

Recently, we had a board meeting with the chapters of the foundation to vote on which two research grant applications to fund. The process is pretty intense. We get applications from doctors nationwide who would like us to fund their research efforts. We have a scientific review board which evaluates these grant applications and explains to us which are most promising and valuable to our cause. This year we agreed to fund Dr. Jane Johnson’s project at the University of Texas Southwestern Medical Center.  Dr. Johnson plans to study the biology of primary spinal cord tumors and hopes to detect their origin. The hope is that if we can better understand the root of these tumors and their behavior then we will better be able to develop treatments which can eliminate these growths altogether and prevent them from recurring.

A couple days after we voted, I got an e-mail from Dan Heck, Malia’s father, suggesting that the grant be called The Nichole Silversteen Research Chair. Coincidentally, Nichole’s brother Jason has become a neurologist since Nichole’s passing and in January will be moving to Dallas to take a fellowship at Texas Southwestern. This seemed like a sign and a good way to gain a little credibility in the medical community for our particular chapter. Regardless of why it’s been named for Nichole, it’s a tremendous and emotional honor because it’s just another way we keep Nichole’s spirit alive.