11:10 a.m.

11:35 a.m.

Q/A Session

Brandon Briery, Camp Director at Aranzazu for Kids

Dr. Nadiia Arora

Brandon Briery

Dr. Ken Cohen

Dr. Barth Green

Dan and Kara Heck

Dr. Frasier Henderson

Dr. George Jallo

Dr. Suzanne Nesbit

Dr. Ori Shokek

Dr. Alicia Stanton

Kelli Young

The Conference opened with a greeting from Joanne Jaeger. The first speaker was Dr. Fraser Henderson, who explained the CyberKnife technology to the group. Quite a few in the group were excited about the prospect of a therapy that is noninvasive. This technology is only effective with certain types of tumors at this time, but any new advancement in the treatment of these tumors is very promising.

After Dr. Henderson spoke, Dr. Suzanne Nesbit discussed pain management techniques. Dr. Nesbit reinforced that there are therapies available to all. These treatments need to be revisited on occasion to ensure continued effectiveness. To be certain that one receives proper treatment one must be honest and open with doctors to enable them to treat pain appropriately and effectively.

New hope for research into conditions was discussed by a representative from the National Institutes of Health. There will be a Scientific Conference in 2007 uniting a group of medical professions.

The afternoon session opened with Ida Bostian introducing Dr. Barth Green from The Miami Project, who spoke about spinal cord tumors and neuron protection during surgery.  Dr. Green discussed the importance of research to restore quality of life and function to those with damage to spinal cords. The Miami Project has developed many technologies that are used around the world to protect the spinal cord from damage during surgery. These technologies include inducing modest hypothermia to protect the cord from damage and using multiple monitoring systems to prevent or lessen the loss of function during the surgery.

In the afternoon Dan and Kara Heck, parents of Malia and founders of Malia’s CORD Foundation, presented the story of the Foundation’s birth. It was so inspiring to meet them and hear the story of the Foundation’s birth. The Hecks are currently funding multiple research projects to help find a cure and to develop therapies that are less damaging to the patient. Their passion and understanding that they may not see the cure in their or Malia’s lifetime are moving; it is for others that they continue to push for the cure.

The afternoon session closed with Nadiia Arora, a naturopathic medicine practitioner. She spoke at length about a project her company, Kromosoft, is embarking on to map or ID certain genetic markers that may be present with spinal cord tumors. If anyone is interested in participating in this project, please contact her to be advised of the progress of this study.

The morning session opened with Dr. George Jallo.  Dr. Jallo’s presentation was about spinal cord tumor research. He is currently conducting a research study that is funded by Malia’s CORD Foundation.  He is attempting to generate a spinal cord tumor in mice by injecting cells into their spinal canal and/or cord. He is completely committed to finding out why these tumors occur and how we can prevent them in the future. Dr. Jallo received special recognition for all he has done for our group.

Dr. Alicia Stanton was a practicing Ob/Gyn who was diagnosed with a spinal cord tumor and endured the surgery and recovery. After her experience, Dr. Stanton realized her passion had turned to fitness and nutrition. She offered extensive personalized advice to many members and shared some general conclusions. One suggestion she offered is to limit sugar intake not just for weight issues but because it seems that tumor tissue likes to feed on sugars.