New and Very Exciting News

I have been talking throughout this week with Kyri, a woman from the PR firm that works for Doctors Community Hospital (where I had my surgeries). She wrote an article on me for the hospital’s newsletter which is currently being printed. She was approached by the CBS affiliate news station in Washington, DC about doing a story on my case. I agreed of course! I am really excited! This is a great way to raise awareness about these conditions since thousands of people who have probably never heard of EDS or Chiari! Hopefully someone will watch it and be able to say “Hey, I have those symptoms! Maybe I should get checked out for that!”

We were hoping that they would be filming sometime while we are up there next week (Nov. 1-3), but of course not! They are filming on Nov. 10, a week after we were planning on coming up there. I talked to Kyri and she said that the hospital would fly me back up for it! I am very excited because it means I get to go back to Bethesda and soon! I really love it there and I will be doing what I am very passionate about! This extra trip will be another opportunity to meet with Dr. Henderson! I am just incredibly excited and feel so blessed for these amazing experiences!

CSF Chapter Progress

Last night I received a phone call from Dr. Henderson. We were able to talk for a while about the first Carolina Chapter meeting. We will hold it in Spartanburg because it is in a good location for North and South Carolina. We hope to have it some time in mid-late January. I am still working on a lot of the detail and will be sending out an email on the Chiari and EDS support group boards to let them know what we are planning. I am also working on the letter that I am sending to the Chair of Neuroscience at MUSC. I hope to finish this by then end of the week as well.

I will be returning to Bethesda this Sunday. I will be able to meet with Dr. Henderson while I am there! I am very excited for the opportunity to go back up there! I will return home on November 3 so I will send my birthday in Bethesda! I couldn’t ask for a better birthday present!

　

Trip to Maryland

I had a great time in Maryland! I feel like a lot was accomplished! We had a great meeting with Dorothy Poppe, the executive director of CSF. It was great getting to know each other and more about each other's story! The CSF meeting was awesome! There were a few speakers in addition to me and they were very informative! My speech went well and I feel like it helped many patients relate with all of the information that was being shared. After the meeting, we had dinner with Dr. Henderson. It was really fun and we actually got some things accomplished! He had the idea of holding an educational meeting at MUSC which is where he did his residency. He knows the Chief of Neuroscience there and has asked me to write him a letter proposing the idea of the meeting. I will start on this right away! I am also going to contact Dr. Godenick about having the educational meeting here! There is a lot to do, but I am very excited!

Proposal Time

My proposal is tomorrow and I am very excited! I enjoy talking about my project and can’t wait to share it with more people! I feel prepared for the presentation and for any questions the board will have!

This week has been very hectic. I have been preparing for not only my proposal, but also my trip to Maryland. I leave Sunday morning and return Wednesday evening. On Monday I have my 3 month post-op appointment with Dr. Henderson. Then on Tuesday I have a lunch meeting with Dorothy Poppe (the executive director off CSF), the Washington Chapter of CSF meeting, and a dinner meeting with Dr. Henderson. At the meeting, I will be giving a talk about my medical journey and experience with surgery this summer. I am excited to have this opportunity to share my story with others and to encourage them in their journeys! This will be a great experience and I will post about it next week!

Preparation for Speech

This short week of school, I have focused on my speech for the meeting in Bethesda. We leave for Maryland next Sunday, October 11. I am very excited to be back and visit with everyone there.

I spoke with Dr. Henderson on Wednesday. We discussed what he wants me to speak about. I will briefly talk about my journey to a diagnosis and treatment. While I am in Bethesda, I will also be meeting with him and the executive director of CSF. We will be discussing my plans and ideas for the Carolina Chapter of CSF. When I return from my trip, I will have much more information.