2009 Conference

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flinnigan

flinnigan

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I just got in touch with the Epilepsy Foundation of Michigan and they've excepted my offer to help promote this years conference in my area. I'm very excited. I missed it last year do to lack of marketing, I was actually in my Neuro's office just 3 weeks before it and he hadn't posted anything. This years is Nov. 13 and is free to those with Epilepsy. There are several others being held throughout the state. Go to The Epilepsy Foundation Of Michigans web site and click on events calendar to view the dates, locations and to register. I'm sure ther are other states chapters that do the same things. We need to support the foundation in there efforts to educate people with epilepsy, their families, the general public and sad to say Doctors. Help get the word out.
 
Great job! I will follow your story. Will the presentations to to their website or Youtube? That would really reach the general public!
 
I'm not sure what their intent is. My intent is to get as many family doctors to come as possible as they are our lfirst line of defense. I had two misdiagnose me and allowed me to wald around for 8 years thinking I was having "hot flashes". The medical community needs to be more educated.
 
Had a fabulous day at the conference today. Met some amazing people. Funny though how I new more than one of the speakers but the rest were great. Hope to do some more work with the foundation in the future. Not a bad day for my first attempt at advocacy it felt very good.
 
Yeah for you, Flinnigan!!! I'm proud of you!!! :clap::clap::woot::woot:
 
Tell us more. Inquiring minds and all that...
 
Well did some good at least. I hit a road block with the media of course. I only got a few sites to advertise it for me. Couldn't get anyone from our local paper to respond and not one person from any local Doc's office came. I did have an ahah moment the weekend before and contacted a school called Woodlands learning center. They take care of the kids in the area with developmental delays including CP and Autism. I slammed their emails and well 5 women showed up. They were great and full of questions. They'd like the Foundation to do a teacher in service for them. I'm going to get to work on that next.

The conference opened with a skit, people with E did short skits about moments in their lives that were greatly effected by E. It was very touching. Then we broke out into sessions. Most were very informative - Robin will be proud I attended one on Neurofeedback and The Keto diet. The only downer fo the day was a Pediatric Neuro that spoke was a bit of a twit. He kept using the terms Grand and Petite Mal bugged the crap out of me. He also blew off a therapist who was concerned she could invoke a seizure with movement. As soon as he was done I ran back to her and wrote down Reflex Seizures for her to investigate. I know I should have called him to the carpet but I didn't. Then the last speaker who was from the Foundation quickly used the term Reflex Epilepsy in his speech so I knew he caught it too. Many times we know more than the Docs.

A good day all in all. What next for me we'll see.
 
I represented my local Epilepsy Foundation at the Proposed Disability Act Town Hall in Philadelphia with the EEOC and the DOJ. The concept was to get Epilepsy covered under the Proposed Disability Act so that we would be protected under disabilitiy laws like so many others. Happily my prsentation was well received. http://www.philly.com/philly/business/67880727.html

I also went to a very discouraging Healthy People 2020 meeting held by Health and Human Services in Philadelphia (one of 3 across the nation) also representing the local Epilepsy Foundation.

Participants were limited to 3 minutes. Most were cut off in the middle of their presentations.

I didn't get any sense of engagement by the panel. They were passive to the presenters, few notes were taken, there was no question and answer session. In fact, there was no interchange between the panel and those present. Unlike the previous week's Town Hall.

(Note: They said something about expecting 400 people -- there were even tables set outside of the auditorium for the overflow, but only about 100 people showed up.)

Basically, the panel said their thing and then suffered through our fragmented presentations. Although I was number one as a speaker, I was cut off and so I sent the Foundation's presentation to HP2020@hhs.gov.

What I did get from the panel presentation was:

The formation of a new office of Health Care Quality -- "a federal interagency workshop."

There was much talk about "framework, objectives and collaboration."

And the vision was stated as: "A society in which all people live long, healthy lives."

I found it interesting that 3 out of the 6 panel members talked about being big fans of Steven Covey (The 7 Habits of Highly Effective People.) What has this country come to?
 
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