Hello,
I am thinking about bringing my family to this meeting in Louisville in June. It seems like a good way for our teens as well as Mark and I to find some positive support. We are so new to this and I am grieving this diagnosis but I know there are positive ways of coping. Have any of you been to these? I looked at some of the powerpoints and the information looks good. What I really crave is community for myself and as a way for my 3 teens to connect with others.
Any tips on how to make the most of this opportunity? Cost saving tips? We will probably need to fly from Wisconsin but when we get there, do most people stay in the conference hotel for instance?
Jackie

Hi Jackie,
Being a young kid and growing up with my dad having HD I can understand where your kids are coming from and feeling. My dad passed when I was 16. Feel free to reach out.
Christine

You'll enjoy it ... best tip? Don't be shy! I've lost track of the number I've been to but it's at over 10. The first few I used to absorb everything I could about HD research and HD care ... then it transitioned into meeting my cyber-friends ... and then after I joined the HDSA board of trustee I lost a day to a board meeting :-( but still manage to connect.

I've been to one HD World Conference and two HDSA ones. All have been informative and a lot of fun. It's easy to make new friends since we all have something in common. I would recommend staying at the conference hotel. They will have a special rate and it will be easier to get to all the events. Teens also seem to have an easy time connecting. Usually there are several events for them.

Will

thanks all, I am starting a new savings category just for the HDSA conference. Other things seem less important now.

Hi Jayyaeg.

We just decided to go to this year's convention. We went to 2012 in Las Vegas but missed this past year. We are bringing our kids for the first time. They will be 11 and 10 by then. Thursday is the National Youth Alliance day with particular programming for the youth. I bet they will also still have mixers and the talent show too. We will drive from Pittsburgh and are planning to stay on site at the hotel. It is much easier to have your room accessible during the day. My husband has HD, and is wheelchair dependent by now so I wouldn't want to be going across town.

We found our first convention to be EXTREMELY uplifting. I met Marsha!! I made friends from oall over the states who I still keep in touch with. You do not feel as alone as you did before attending a convention.

APPLY for the Lundbeck scholarship. You will find the form linked at the HDSA website. It would give your family a full ride to the convention. Good luck, see you there!

Patty

Thanks for the post Patty,
We did apply for the scholarship and hope to hear something soon. I am glad you reminded me this is coming soon. It really is spring (not that we have known it in Wisconsin!). I need to make sure I get the time off work and try to get the kids to plan their schedules around it. My son is in college and is taking a summer course so i will have to do some talking to get him to miss school. I know the convention will be more valuable!