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SCTA President’s Message

Linda Stophel
President, Spinal Cord Tumor Association, Inc.

As the President of the Spinal Cord Tumor Association, Inc (SCTA) I’d like to thank everyone for their support for over last 5 years. It’s hard to believe it’s been that long, but it has and we are going strong. Since 2003 we held 3 conferences and each was successful. In 2007 our President and Vice President met with the National Institute of Health (NIH) Office of Rare Diseases for an NIH Workshop on Spinal Cord Tumors in Bethesda, Maryland. The participants at this workshop were Neurosurgeons, Pathologists, Radiation Oncologists, Central Brain Tumor Registry, research scientists for Brain and Spinal Cord Tumor Repair and many others in the medical community. This was the first workshop on Spinal Cord Tumors and it was an honor to be a part of it and to be able to represent all SCT survivors/patients and see research being done on spinal cord tumors.

In the last five years the SCTA has also held teleconferences with some of the best speakers in their respective fields. We are using a new discussion forum, which has good traffic, and we found the forum is the most useful tool on our website. You can still read postings from the old forum if you like. We have spotlighted some amazing people and each story is unique. We added links to the library section of the website, so check that out. We’ve added new doctors and others in the medical field to our Advisory board. In 2008 SCTA participated in a fundraiser in the DC area, which enabled us to give $34,908.07 to the CORD Foundation for SCT research.

I’d like to thank all of the Officers/Directors for the dedication they have shown. Some have been with the Association since the beginning while others joined later on. Each board member is an SCT survivor and almost all work and have family and still have time for the monthly board meetings and they help to keep the organization going. This is a volunteer job. If you are an SCT survivor and would like to know more about being on the board, please email us at sctassociation@yahoo.com so you can join one of our meetings and see what you can bring to the table.

For the next several years we want to educate more through the use of teleconferences and by adding more articles to the library page. We hope to create a teleconference recording with questions/answers to help newcomers. This will be done in the memory of Joe Vincquerra who was a part of helping SCTA get started in 2003. We are excited to add a new category on the forum for caregivers. Nancy Carter will be in charge of this and she is hoping to get enough information to make a brochure just for caregivers. So many times our caregivers are taken for granted and they are so vital to patients and we want to make sure they have the information they need and get support as well. We have decided that our next conference will be in 2011 so that SCTA can concentrate on other projects. We hope our participants will look around the website and find other SCT folks near them and meet for coffee, lunch or dinner.

Our webmaster Robert Green is very excited about creating a Youtube video in the near future. It can be helpful to hear stories from those afflicted by SCT. It can be very frightening to be in front of a camera, taping your story and knowing its going be on Youtube for the whole world to see. But sometimes seeing a face and seeing the expression on someone’s face can tell a story in a better way.  So if you are brave enough to want to videotape your story, email us at the SCTA address and I will let Robert know you are the bravest person in the world. We have started a newsletter and pamphlet for doctor’s offices and other major hospitals for the newly diagnosed. Each time this got started it stalled so we hope the next time we get this started we will go all the way. If you have any experience or suggestions about any of these please let us know.

Thanks again to everyone who has had a part in the SCTA. You may think you don’t have much to offer, but by reading the forum and getting in contact with another person that has just been diagnosed, or is having a hard time accepting their new life; to have someone say “Hey I’ve been there and know exactly what you are going through” can mean the world. You may not feel comfortable posting on the forum so emailing can be a great way to support someone.

If you are able to make any kind of donation to the SCTA we are a 501 (c) (03) non profit organization. Your contribution is tax deductible under the fullest extent allowed by IRS laws. We have a few donors that take part in employee matching programs. Thank you for doing that and keep it up if you can. If you are good at fundraisers and would like to do one for SCTA please contact us.

Linda Stophel
President, Spinal Cord Tumor Association, Inc.