March 23rd 2013

Thank you everyone who came out for our first meeting. We were a little slow to start giving everyone a chance to get there, and the agenda was left a bit open. Everyone who came was nice enough to fill out the survey and going forward we will have clear goals and discussions for the meetings. I’ll add a more expansive Meeting Minutes after Diane and I have a chance to get together and share notes.

Just for an idea of what went on here are some of the things we discussed: Medical Community Education and Community Awareness: What can we do? We are going to work with a couple of local doctors that we know who are involved with Brown Medical school and put together a speaking event. Our idea is to have a few of us who are interested, to speak to doctors in training about EDS, what to look for and what complications we experience.  What would you like a doctor to know about how EDS affects you? Another idea was that with the conference coming here in the summer we might be able to have one of the news stations carry a story about it and EDS.

We spent time discussing the need for an upright MRI in our area. Currently the closest one is in Connecticut and that one is shut down until the summer. We spoke about different ideas to encourage an imaging company, medical school or hospital/doctors office to acquire one. At this point we need to come up with a comprehensive pamphlet that we can send out regarding the benefits of having an upright and are looking for information to include. We also need to gather research to show why this would benefit our area so if you know of a study or any information to help please pass it along.

We briefly spoke about the EDNF conference that is happening in Rhode Island this summer, we will be bringing more information as it is available, such as the price and speakers as they are added.

We also talked about different doctors in our area and how they have helped, as well as different therapies and treatment options. We would love for those of you who have tried different therapies to share what experiences you’ve had, good or bad. If you would like to speak about something you’ve tried please let us know. We would like to spend some time each meeting having someone talk about something and sharing the positive and negative effects.

We talked about other ways to advertise our meetings such as putting an announcement in the newspaper for our next meeting.

The next meeting date and time will be listed early next week.