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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JoAnne,
Conference is the highlight of my year! I love seeing our 'family' and getting strength from each other. This year, lots of us are thinking about taking our kids, since Denver will be so much fun, but each family will have to decide that individually. Registration and all the information about hotel will be posted soon. I am sure we will get a PPMD email about it. In addition to the conference, on Sunday I am trying to plan a PPMD float trip (1/2 day) somewhere near Denver that is handicapped accessible and mild enough for little guys. On Monday is the Jumping for Jack PPMD fundraiser. It is a golf tourney, dinner and silent auction. Many will be staying for that since we will be there anyway.
I am looking forward to meeting you! It will be a GREAT conference!!!
Hi JoAnne,

I'm pretty sure the conference information goes out in March, after the advocacy conference. You can book your room in the hotel where the conference is being held or one near by. The conference is usually very intense (lots of information all day long). In the past couple of years they've done a field trip for families one evening. There are big sessions and smaller sessions. You will be able to find presenters at meals and during other presentations so that you can ask specific questions without having to use a microphone. It is a great experience about a horrible disease. You will meet people like you who are new to the world of Duchenne and you will meet people like me who's son is 17. Like Lore said: we are a family. I look forward to meeting you.
Hi JoAnne,

I went to my first conference last year in Atlanta. My son, Billy, age 9, was diagnosed almost 5 years ago in April. I won't repeat the previous responses but will suggest compiling a list of questions that you undoubtedly have and keep adding to that notebook until June. You will have many opportunities to get all of your questions asked at the various sessions and breakout sessions. I'm so glad I went and do not want to miss another conference. Billy is doing quite well at this point, but of course, the clock is ticking and I find myself a little more anxious this year as he just turned nine--although I am quite the optimistic person but realistic at the same time. It was very comprehensive and intense at times. I was very impressed at the content of the conference. God Bless Pat Furlong for having this for the parents. It was a great opportunity to meet other moms and dads at varying levels in their diagnoses. Hope to meet you there!
Hi JoAnne,

PPMD will be posting Conference information very soon (By mid-March). Hotel and other information will be available.

Some pointers as this will be your first time attending. I suggest taking time to read the agenda, maybe a few weeks before going and again just before leaving before selecting the sessions you think are of the greatest interest. Don't stress out thinking you should attend each and every session. I describe going to the Conference a bit like going to Disney World the first time. While everyone wants to go on every ride you'll become exhausted and wind up not appreciating the trip. The same could be said about the Conference. The sessions are broken into age groups and themes beginning with the basics and moving into more advanced research and care discussions, so making your choices should be more straightforward. Again, pick the sessions that you think will be most useful and reserve some time to speak with other parents and attendees. Networking is a useful way to meet families and individuals who can become great resources. Additionally, many presenters are available during breaks and at restaurants and typically are open to questions and discussions. It is sometimes a challenge to retain all the information heard the first year, so going back will reinforce what you've learned.

I hope this is helpful.

Brian Denger

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