I am starting this post so that we all have a place to discuss the Conference in July. This will be my first year attending. I am going with another mom from Louisiana and I am very excited! I hope to meet you all there!!
We are going also for the first time. Our 3 yo son was just diagnosed in Oct. and we are excited to learn all we can. That is my therapy! Also, it will be a good break for my husband and I away from our kids!
My wife and I will be there and this will be our first year. Our son Connor was just diagnosed with DMD on May 22, 2008. I agree learning all that I can to help our son conquer this challenge is our therapy as well. We will do anything to help Connor have the best life possible and we hope to learn a lot from the more experienced families.
My wife and I are attending for the first time as well. We live outside of Philly so we will be 'commuting' in (we may try and stay over Thursday night so we're ready for the ROcky Run on Friday). So if anyone has any questions about the local area - ask away. We're looking forward to meeting everyone...
We will be attending for the first time as well. We look forward to connecting with others and gain more tools (weapons) to help us in the fight of our lives!!! Can't wait to meet "y'all' face to face! See ya in July!
I thought I'd add a little to the discussion for those who are new to the Conference.
My best advice is to look at the PPMD Conference Agenda (Click on the Conference Registration window to access.) and choose the sessions you think will be most interesting, beneficial or provide a good start to learning more about DMD before arriving. Certainly you can change your mind once arriving or after speaking with others about session content. As much as you will learn during the sessions the time spent "networking" is as important and provides a nice break from what can be an overwhelming several days. I compare attending the Conference to visiting Disney World with a young child. As much as you'd like to go to everything it isn't possible and trying to do so can make for a less than valuable visit. So, don't stress over missing a session or two as PPMD supplies a large binder with information about many sessions supplied by the presenters. The Conference is wonderfully organized starting with the basic information about the genetics and pathology of DMD before going into discussions about care, clinical trials and research. The Saturday Breakout Sessions provide a range of topics that may be most difficult to decide which to attend as all the sessions are worthwhile. The days are long and you will be exhausted, yet also feel empowered from you learn.
Again, the time spent with other parents is a beneficial component to the Conference experience. Learning the science and research strategies and hurdles is exciting, yet we have to care for our sons and other family's experiences can provide the insight that is helpful to us. At lunch, during a session time you need a break and at dinner speak with others. I recommend trying to meet people who have a child(ren) your son's age and some who are older. The practical recommendations others can provide will often save frustration or provide the stimulus for improving care for your own son.
Rhiannon asked about a lounge at the hotel and yes, there is one on the ground level. It is a bit pricey, but a place to meet. Across the street from the hotel is a Hard Rock Cafe and the Independence Brew Pub has more seating and a larger bar area. The Reading Terminal Market (http://www.readingterminalmarket.org/merchants/) is also across from the hotel and has many small restaurants in an indoor public market type setting. There are many other small restaurants in the area within walking distance of the hotel. If you need a long walk or are a runner there is a paved path after the Art Museum off Kelly Drive that follows the Schuylkill River (http://www.gmap-pedometer.com/?r=1992458) .