“Go confidently in the direction of your dreams. Live the life you have imagined.”
Henry David Thoreau
I’ve written about conference a couple of times before, and it’s clearly been very important to my family. Even after years of “education”, I find that we learn so many new things every conference. After all, the progress in understanding the disease and finding successful treatments is ever-evolving. We certainly expect our caregivers to know what’s new and what is on the horizon. It only follows that if we are an active part of the care team, we should be in the know as well. Beyond the education though, it’s what I learn and gain from being with so many people who “get us” that makes the whole experience incomparable. My family leaves conference with a full brain, a full tank, a full heart and engines revving with Hope.
If that’s what it’s like for a veteran, it’s even harder to put into words what the experience means for a newly diagnosed family. When you literally have never had the chance to speak with somebody else travelling the same road, and you are dealing with a frightening new diagnosis, and your child in pain – dark doesn’t even begin to describe what that is like. Add lonely, overwhelming, demoralizing, intimidating, harrowing and you start to come closer. For those families, conference is literally a game changer. It makes all the difference in how they feel about the future – and they too leave feeling Hope, where there was once only Fear.
Needless to say, I feel privileged to be a part of the planning of such an important event. There are over 40 people who have been working as volunteers, for seven months already, to put this event together. That’s not to mention the staff from the Region and the National Office who will have so many hours, days and weeks invested.
I also feel a bit pressured… because frankly, I already know that there is no way we’re going to get it right for everybody. That is… there is absolutely NO WAY that this conference will be perfect. Can we just all agree on that? There will likely be around 1000 people in attendance – so it’s pretty fair to say that not everybody is going to like what we are having for dinner. (We don’t even know what we are having yet, and I still feel comfortable with this assertion!) Not everybody will like every speaker, and I’m sure we are going to make some mistakes. But I want you to know that we really are trying…we think a lot, listen a lot, talk a lot. We really do care about the people who will be coming, whether they are coming to attend or coming to volunteer… and we really do expect that this will be a great conference!
We had our one and only in person meeting this week – at the conference site, which is the Hyatt Regency Orange County. We got to tour all of the conference rooms, see the main lobby area, check out the pools, and get a feel for the property in general. It’s a very nice place, and frankly, we were all giddy imagining the opening night dinner in the big beautiful ballroom! We still need to finalize which rooms will be for parent breakouts, which rooms for general, and how the kids rooms will be assigned. I’m not supposed to give too much away until it’s all confirmed – but can I just say that the kids’ rooms each have their own private bathroom, inside the room? How cool is that?
And the property has two pools. One of them is surrounded by a large deck area, and is adjacent to tennis courts and a basketball court! Looks like we might be able to use that space during the kids’ days for some planned activities. Very nice….
And… for the first time that I know of… it looks like we will be having two family nights! If you are unfamiliar with the general agenda of the conference, the Opening Night is Thursday night, and includes dinner and an opening presentation. Dinner is generally on your own on Friday and Saturday evening, but there is usually a family night one of those nights. That activity is dependent upon what the hosting Region plans (and is able to fund). Over the years, I have been to family nights at Baseball Games, Family-Fun Parks, and Carnivals put together on the hotel property.
We had some pretty big goals around this when the committee first started talking so many months ago. On the one hand, we love the casual feel of an event at the hotel, because it’s not as physically taxing and it allows families some great opportunities to network and becomes friends. It’s pretty important! On the other hand, we also love the idea of people getting a chance to go somewhere together, off-property, with the new friends they have made. It also could represent a fantastic awareness opportunity…. Last year, one of the JA families was able to throw out the first pitch at the St. Louis Cardinals game, and it was up on the Jumbotron for everybody to see. That could really spread some awareness to have hundreds of JA families at the same place at the same time!!!
We stayed true to our theme of “Dream, Believe, Achieve” and decided that maybe if we could dream it, we could make it happen. And it looks like through the hard work of the development staff in the AF Region who have been busy securing sponsors for our conference needs, we will be able to make that dream come true! Tentatively – a Friday Night extravaganza for families at the hotel, and a Saturday night off-property together.
In addition to the family activities, the sub-committees have been hard at work finalizing the topics for the parent sessions. I have to share that this is a daunting task – because frankly, there are simply not enough slots to include all the educational topics families need. And we are reading and taking in to consideration not only the feedback from last year’s conference, but several years prior AND the well-respected and sage advice from our Medical Advisory Board. I’m excited to say that it looks like we’ll be able to fit in at least one round-table session, to handle some of the topics that might not flesh out a whole break-out session (it’s a great way to squeeze in more topics!). Now that we have a final draft of topics, we’re deep into finding the best speakers for everything.
The Children / Teen Sub-Committee and the Young Adult sub-committee are hard at work on their own schedules as well…finding the best activities for everybody. We also have an entire entertainment committee, who will obviously have their hands full planning and executing all of these tremendous activities! We have an Advocacy Committee that will be working on the general session for that topic, as well as activities for each of the children’s rooms. Our Development and Sponsorship Committee is working on everything from finding big sponsors for our family activities, to helping secure in-kind donations for our registration goodie back-packs. And last, but not least, our Wellness Committee is working on ways to incorporate overall wellness education and opportunity into the conference.
Over the next few months, we’ll be tackling everything from centerpieces for dinner, to obtaining phenomenal and inspiring general session speakers, to setting up as many group discounts at local establishments as possible. I am truly awed by how many hands are involved in this. I helped with the planning of the 2008 conference, and now that we are a larger Region, there are so many more people stepping in to help. When I say it is a privilege to work with them, I am not kidding.
The registration for the conference will likely open at the end of February. If you are on facebook, and you have not yet liked the Juvenile Arthritis Conference page, please do! Allie, the administrator, will be sending out information regularly. Once registration opens, you’ll be able to see the details for the conference, and the total agenda, including information on the family night activities.!!! I’m so excited, I could just bust :)
So for all the things I can’t tell you… there are a few things I can:
The hotel negotiated rate for conference is $149/night plus taxes. That rate will be good for 3 days before and 3 days after the conference. For information on the hotel’s specific amenities, see their website.
The cost for the conference for families and individuals will remain the same as last year. To see those rates, you can checkout last year’s conference page. (this page will probably come down soon, when the 2013 page goes up..)
The hotel is about one mile from Disneyland, and is within walking distance of many restaurants and shops. Here is a map of the area that the hotel gives out so you can see for yourself! The Hyatt is one the corner of Harbor and Chapman.
The general sessions will be streamed live again. We made a special request to have the closing session streamed as well, because I know several people were bummed to miss that last year. We will try to stream some other session as well, but frankly, it can be pretty expensive to do and will be dependent upon the ultimate layout of the breakout sessions in proximity to the “drop” used to stream the general session. Looks like we will also have the ability to take live feedback via Twitter during the conference – and during the general sessions, panelists will be able to answer some of those questions.
Whenever possible, we will make the powerpoint or video presentations available online.
I hope that many of you will be able to make it to the conference. I know it can be a tremendous expense to fly here, especially if you are coming from across the country or even across the ocean. But if you are going to make a vacation of coming to conference, Southern California is pretty ideal! And as we are planning, if you have specific questions, I will do whatever I can to answer them or get the answers… or you can submit them through the facebook page as well.
Hopefully, I’ll see you in July!