I am not sure where to start sharing our experiences at the Learning Conference this weekend, so I guess the best way is to just jump in. I will start with my overall impressions and plan on sharing specific items discussed in the sessions in the next post.
On Thursday, we got there just in time to go to the welcome reception – it was a good chance to get our bearings, chat with some of the attendees, and check out the venders. We stayed at the Embassy Suites, which was kitty corner to the convention center. The Marriott was directly across the street from the center, but both were very convenient.
Friday morning came very early – earlier for those who didn’t sleep through the power outage at the hotel. It was inconvenient at best (like EDSers need any help not sleeping) and scary at worst (those with power chairs or oxygen were relying on a full night’s charge to get them through the next day, not to mention that there were a whole bunch of people with wheelchairs or limited mobility on the upper floors, who were very vulnerable in a storm/ power outage). Unless you were us and slept right through it. I swear, I am a very light sleeper and slept very poorly that night. That hour or so of storm and power outage must have seriously been about the only hour I slept that night.
Anyway, the open session got started a little late, but it really was a big morning. Of course, it was nice to hear Dr. Tinkle speak, but one of the EDNF board members, really stole the show before the key note address. He shared some big plans the EDNF is working on. First, he announced plans for the creation of a research data bank, to gather and store blood and tissue samples, with the goal of fostering research. Which was a pretty impressive revelation all by itself.
Then he shared the really BIG news: the EDNF is in talks to push forward with the creation of an EDS Clinical Care and Research Center. This would be a center that would be affiliated with a hospital system and be a dedicated center where real experts in various specialties would be able to treat EDSers. The plan is that this would be the first of a network of centers that would eventually be built around the country. They are currently talking to 3 hospitals about ‘hosting’ this facility, but there will need to be a big fundraising push to make it happen. It does bring me hope though and I think that is exactly what it was designed to do!
That was an amazing way to start the morning and then we were off to a long day of sessions. (Like I said, I will go into specifics of those in a subsequent post. Likewise, I think I will talk about Em’s experience of attending on Friday in a separate post.) The food that was provided was ok – certainly could have been worse! I thought they did a great job of providing refreshments – fresh fruit and drinks and a lot of it.
On Friday afternoon, we also had the chance to talk to the Silver Ring Splint Company while Em was with us and they were kind enough to adjust Em’s thumb splints. (Our OT fought insurance so we could get a few splints last year, right as Em was getting so terribly ill. Whereas they were incredibly important to me then, they became less and less important as her neurological symptoms took over. And when they didn’t fit properly, we just had bigger issues to deal with at that time. They have essentially sat in the box since we got them. So, it was great to be able to have them adjusted – maybe, just maybe, she will be able to use them now!)
One general thing that struck me this weekend was that the ‘superstar’ docs were walking in the halls with the attendees and even attending sessions, sometimes asking questions. I loved the fact that these brilliant minds and acknowledged experts were willing to continue learning about EDS. They were staying in the same hotels and eating at the same tables as the rest of us. That level of accessibility is really unique and very special.
On Saturday, the day opened with talks by Dr. Grahame and Dr. Francomano. I have to say that it was a real honor to hear Prof. Grahame speak – he is really a special, brilliant guy and the EDS community is so fortunate to have him on our side. It was interesting to learn that he became interested in hypermobility because his own daughter was in ballet and was hypermobile. I had heard so much about him and was not disappointed – he is quite amazing! Dr. Francomano spoke to the topic of pain management. I was pleased to hear her talk about the compounded ointment that she is recommending. I had heard about it before, but was happy to hear her describe how it was to be used. Definitely something I want to bring up with our pain management doc. Dr. Francomano seems exactly as nice as everyone has raved about.
Saturday was a lighter day session wise, at least as far as my personal plans. I was able to hit all of the important sessions on Friday, so I was able to take it a little easier on Saturday – I wasn’t taking any chances that I would miss Dr. Pocinki or Dr. Levy or Dr. Smith. Both days I had a chance to chat with folks who I know from online and also some folks I had just met. That was really a highlight for me.
Another highlight was the Q and A with the (basically) entire panel of doctors on the speaking roster. Since there was limited time for questions after most of the sessions, folks could submit written questions and then about an hour during lunch on Saturday was devoted to the panel answering those questions. Interestingly, the experts did not always agree on the answers and I thought that was actually pretty helpful in an odd way – I came away understanding that there really may not be one perfect answer for any issue. Personally, I like hearing various sides of an argument, so I appreciated the differences of opinion. At any rate, I thought it was a very wise use of time.
By Saturday afternoon, Andrew was getting antsy, not so much because he wasn’t enjoying himself, but because he was in a lot of pain. He did a fair amount of walking around over the weekend and ended up at the ENDF store a number of times. He bought me a bracelet. Then he bought Em a squishy zebra. Then he bought a wallet card with EDS medical info for Em. When I said he should buy two more, one for him and one for Luke, he huffed a little but went and bought them. Later he bought me Dr. Tinkle’s book. He also bought numerous keychains that the kids were selling as a fundraising project and maybe a couple raffle tickets.
Saturday afternoon, once the sessions started winding down, we were able to go back to the room and get dressed for the banquet. Again, the food was fine – not stellar, but nothing to really complain about. I have to say, I have never seen so many zebra stripes in one place before as at this banquet – there were zebra stripes everywhere I looked! From the sounds of things, the silent auction was quite successful and the kids raised $2,202 for the EDNF.
There really is too much to really cover in one post – it was a long and busy weekend! I can say that I am so glad we were able to go, we all benefited hugely from the conference. It was really an amazing experience and we will do our very best to be able to go again next year. I want to thank the EDNF for putting on the conference and all of the volunteers who helped make it a success. The panel of experts really was fabulous and so helpful. From my personal point of view, the conference was a huge success. Andrew really got a lot out of it and we had some serious and important discussions. That too, might be fodder for a separate post. As I have said, this experience was all I hoped it would be and I feel very fortunate to have been able to go.