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2010 Conference

Hello! I am not real sure where to put this question so I decided to post it here and hope it gets the reponses I am looking for.
I am new to the world of Duchenne, my son Landon was diagnosed last May. I know that the 2010 conference is going to be held in Denver, CO June 24-27 but am unsure when registration starts? Also if anyone can give me any advice or tips on how to make the most of this trip and what I need to be sure I do or might want to do to get the most information possible and make it enjoyable I would really appreciate the tips and advice. Also any tips on where I need to book a room to stay because I do not know where it is held???
I am very excited but in a nervous kind of way about this first conference, howeverI am looking forward to meeting some of you all in person and hearing all the hope we all have to look forward to.
Thanks again!
JoAnne Hathcoat

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Permalink Reply by Karen on January 20, 2010 at 12:26pm

Hi JoAnne

The particulars for the conference will be mailed to you and posted on the website in the spring. It will have location, extra-curricular activities and conference session outline. Typically the first evening/day they have presentations for parents new to dmd and the conference. My advise is "go at your own pace". Don't feel like to have to be at every session if you get burned out. It is a very intense experience. Connect with other parents, especially those that have a son close in age you your own. Maybe you will run into someone from your city or state that you can network with. This can be a very isolating disease. I've gone to the conference 9 times and learn something new each time. Look forward to meeting you in Denver.

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Permalink Reply by JoAnne Powell on January 20, 2010 at 3:13pm

Thank you so much! I am very excited to even know I can go! When you said it will be "mailed" to me, where do I need to go to get my address sent it? Is it mailed after I register online? Thank you for your information! I look forward to meeting you as well!
Take care! JoAnne

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Permalink Reply by Darcy Tumminello on January 20, 2010 at 8:32pm

JoAnne,

Last year was my first year and I would attend every year if I could. I do not fly and was able to make the drive last year.
You'll laugh, you'll cry and make great friends. In addition, you will come away with hope and knowledge. You will be able to make better decisions. I remember arriving at 7 pm the nite before after 11 hour drive. When checking in, I noticed some DMD boys in Wheelchairs. I went up to the room and just collapsed on the bed and cried. I can't do it, I can't do it. I wanted to get in the car and go home. That would have been a big mistake. You will feel much better after the first day and for the first time, be with people that really understand what you are going thru! Good Luck and enjoy all you can. My favorite part was at the end when all the DMD boys in the Wheelchairs talkied at the end giving us parents wiith young ones hope and educating us on growoing up with DMD. I was actually able to talk to some of them individually and they're truly inspirational...you'll enjoy every minute of it...very long days, worth every minute of it.

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Permalink Reply by Karen on January 25, 2010 at 11:03pm

Hi again

If you are registered with PPMD they will mail it to you. I think you can also register on-line now. If you come to this site, you will see it. I am thinking April.
Darcy makes a good point. There are more guys with dmd that are coming to the conference. There were 0 when I started (we stayed in the residence halls at the university of Pittsburgh. LOL) They are a very competent and confident bunch.

JoAnne Hathcoat said:

Thank you so much! I am very excited to even know I can go! When you said it will be "mailed" to me, where do I need to go to get my address sent it? Is it mailed after I register online? Thank you for your information! I look forward to meeting you as well!
Take care! JoAnne