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.
What other research projects to cure spinal cord tumors is the the CORD Foundation currently sponsoring?
We've also accepted the application of Dr. Richard Gilbertson of St. Jude's Research Hospital. Dr. Gilbertson will study spinal ependymomas, the most common type of spinal cord tumors, occurring in both adults and children, with very limited treatment options. The proposal theorizes that a particular stem cell known as the radial glial cell is the most likely origin of the spinal ependymomas. This research will use the latest in stem cell cultures and the first mouse model to research this type of spinal cord tumor. Hopefully the use of cutting edge technology will provide insight into how we can treat spinal ependymomas.
How can someone get involved with the CORD Foundation and its chapters?
There are a million ways to get involved with CORD. It might seem easy to say send a donation, but honestly the foundation, and anyone who would want to get involved, will get more out of the experience if they give their time. CORD is completely volunteer-based, so there are always things people can do to help. Writers like yourself can do a write-up and help us gain publicity, bloggers and Web designers can help us increase our visibility on the Internet; you can ask your company when they allocate their corporate donations and if they are interested in learning about CORD; tell your Myspace or Facebook friends to add us to their friend lists. Recently, we've had some friends donate to the foundation in lieu of favors at their wedding; the possibilities are endless, simply tell your friends and spread the word. If we pool our resources and work together, our success can be limitless.
And if you’re really motivated, visit www.cordfoundation.org, and contact any of us and get the info on starting your own chapter and what our goals are. If you really want to help and none of the above sounds appealing to you, simply ask us what you can do and we’ll find a way to put your talents to use—we’re not shy! We are however, extremely grateful.
Marie can be reached through Nichole’s CORD Foundation, a chapter of Malia’s CORD Foundation, INC. at [email protected]