Monday, February 3, 2014

MS Blogger Advisory Board Summit in NJ

Does anyone else think it is funny that I was invited to be a part of a MS Blogger Advisory Board because I am considered an "influential blogger" and then I didn't blog for like twenty years?!  Ok about a week actually but still. . . I promised I have great excuses reasons.

First of all I know this will come as a huge surprise to some of you but I can't do it all.  I try to convince myself that I can and then the big old MS monster arrives and reminds me I can't. Then I sleep for about four days straight until the fatigue gets better.  Let's just say traveling to NJ followed by a super stressful week at work and several evening commitments really kicked my butt.

Second my laptop is being a big pain in the butt.  It is only six months old and it has decided it doesn't want to charge anymore.  So in order to get it to charge I have to position the cord in a very specific way and can't even move it a millimeter or it will stop charging.  So yeah there is that. No laptop makes the to do list get very long.

Anyways got it to charge a little so going to quickly get this post out before I forget everything about my AMAZING weekend in NJ sponsored by Novartis (the makers of Gilenya which just so happens to be the MS treatment I'm on).

It's not often that I get to go on an all expense paid trip to NJ so I had to make the most of it! I packed very light (I hope you are impressed) and arrived to the airport with plenty of time to drink a glass of wine and grab a sandwich before my flight.

I arrived to the hotel (the Hyatt in Morristown, NJ) several hours later and had a few minutes to relax before the evening dinner.  Check out my hotel room!  My TV even had my name on it when I turned it on.  Yes little things impress me.  I'm use to staying in hostels.  Haha!

I immediately knew this room was designed with a blogger in mind. . . check out that "selfie mirror!"  Isn't it awesome!?  I need one like that in my room (of course the bigger problem in my room is that there is usually clothes all over the floor to distract from the actual photo)!

The group met up with the Novartis staff in the hotel lobby.  As I mentioned there were nine bloggers (including me), two caregivers/spouses, and several Novartis staff members.  We went to a restaurant across the street from the hotel and had a delicious dinner.  There was wine which of course led to all of us becoming fast friends.  We talked about our blogs, MS, and everything else!  I was so exhausted by the end of the meal and I think everyone else was too. 

The next morning we met downstairs in the hotel for breakfast and the summit.  We were in a room off of the hotel lobby which made it very convenient.  We didn't need coats or to go outside which was nice considering it was freezing out!  Above is the great group of bloggers.  I had so much fun getting to know each one of them.  We all had one thing in common - MS of course but we all had so many differences too.  It was so interesting to hear about everyone's experiences.

There were a few of us on Gilenya but Novartis didn't just invite people on Gilenya.  They wanted to hear from all different views.  I love that about them.  Others were on Tysarbi, Tecfidera, Rituxan, or no treatment at all.  One person had even done a stem cell transplant/clinical trial several years ago.

We represented California (2 bloggers), New Mexico, Florida, Virginia (2 bloggers), Delaware, Louisiana and of course Massachusetts (yours truly).  Some were married, some weren't. Some had kids, some didn't.  Some were diagnosed many years ago and some were newly diagnosed.  DIVERSE group of amazing people!!!!

Here we are with the Novartis staff who participated in the summit.  They were all amazing.  They represented several different departments are were so interested in what WE had to say.  They wanted to hear it all - good and bad.  They really listened and genuinely cared about what we had to say.

It was great to be able to share feedback and see several of them taking notes.  Oh and they kept thanking up.  Like 100 times!  I really feel like they will take the info we provided to them and use it with their staff to make some changes in how they do things.  It is pretty awesome to know I can make that kind of impact that will affect so many other people living with MS.
 
So basically we talked, then ate, then talked some more, then ate some more, and then ate some more after that.  I'm not kidding.  They fed us a lot of food!  We had a delicious breakfast and a couple of hours later it was already time to break for a delicious hot lunch.  We got to chat and get to know each other some more while eating which was nice since I hadn't gotten a chance to talk to everyone at the dinner the night before.

Oh and it was during lunch that I realized I only had pictures of my hotel room and food on my iPhone and as any good blogger would I made a point of taking people pictures! 
Guess what. . . it was time for a snack break!  They had this amazing trail mix buffet set up for us.  I loved it but was so full I could hardly eat any!  Luckily there were little bags so we could take some to go!

The whole day was so interesting.  I loved hearing what other people had to share.  I plan to tell you more about the actual "stuff" we discussed in another post (I know you've heard that before but I promise to try really hard to get to it this week).

How cool is that light that was hanging in the hotel?!  Oh and we were important enough to make the hotel tv screens in the lobby. Again easily impressed.

That night we were on our own for dinner since the formal even was over.  Many of us decided to go to dinner together at one of the restaurants in the hotel.  We didn't have to go outside to get to it which was an added bonus.  We went to Ming 2 and it was SO good. I had chicken pad thai and a delicious martini with a crazy garnish in it!  Lychee fruit I think!?

We enjoyed even more great conversation and all left the restaurant full and exhausted.  I think it was only about 8:30 when we got back to the lobby but we were all so tired we decided to call it a night and said our goodbyes.  Oh and lucky me had the earliest pick up time the next morning. . .

So year regarding that early pick up time. . . I overslept.  I NEVER oversleep.  Like never.  I set my alarm for 6 AM since my ride was picking me up at 6:30 AM.  Only problem was I set it for "weekdays" and it was Saturday.  Stupid iPhone.  So at 7:30 AM the car service called me to let me know they were leaving since I hadn't come down! WTH?  Couldn't you have called me at like 6:45 AM when I hadn't come down yet?  You had my flight info!!!  Well thankfully I had packed the night before and had my clothes laid out.  I got ready in literally 5 minutes. . . maybe 7.  I ran down to the lobby and prayer the entire drive to the airport that I would make my flight.

I stood in the security line cursing every slow person in front of me.  I ran to my gate with my boots in my hands (no time to stop and put those back on) and when I got to the gate the staff person said "Jodi?"  Guess who was the last person to board the flight?  THIS girl!  Yup that's how I roll.  The flight wasn't even half full and I don't think I got any glares from the other passengers.  Whew!  It was a close call.  Too close.  I was sweating!  Haha!

At least I had a pretty view during take off!  Nothing like ending the trip with a bang!

It was such a fun time.  I loved meeting the other bloggers and feel SO honored to have participated in this event.

Thank you Novartis for inviting me and being interested in my feedback.  Thank you to all the other bloggers for sharing your experiences with me.  I learned something from each and every one of you. I look forward to being in touch with each of you in the future!

Go check out their blogs:

·        Dave Bexfield - http://activemsers.blogspot.com/
·        Jamia Crockett - http://www.mymsheels.com/index.html
·        Jeri Burtchell - http://www.partnersinresearch.org/
·        Joan Wheeler - http://shortinthecord.blogspot.com/
·        Jon Chandonnet - http://jonchandonnet.com/blog/
·        Lisa Emrich - http://www.brassandivory.org/ and http://www.msbloggers.com/
·        Matt Allen - http://www.mattsms.com/
·        Nicole Lemelle - http://www.mynewnormals.com/

Let me know if you have any specific questions about the summit and I will try to answer them when I do my follow up post on what we discussed.



11 comments:

  1. Great recap! Not sure any of its have gotten to the meat of the meeting yet. And you got more pics of the people than I did. Lol can I borrow some for my part 2? --Jeri

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  2. Great recap! Not sure any of its have gotten to the meat of the meeting yet. And you got more pics of the people than I did. Lol can I borrow some for my part 2? --Jeri

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  3. Wow, blogger of the year with all those pics! I think my favorite part is how your blue sweater/scarf popped out against what everyone else was wearing. Fierce! We stayed in that same hotel when we were in Morristown a few years ago. Gorgeous! I love hotels, so the name on te TV would have made me super excited, too! Glad you had a great experience, what an awesome thing to connect with other MS patients, and how wonderful of Novartis to put this together. I wish stuff like this existed for SLE!

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  4. This is such a cool trip! I'm so glad you got to go and meet all these awesome people. That selfie mirror is epic. Also, now I'm hungry.

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  5. Thanks for the update. You absolutely deserved to be there! You are a great blogger. And great person, too.

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  6. Jodi! You're right, the amount of food was epic. Did you get your free ham from Novartis? Mine came in the mail yesterday with a note that read, "Dave, you are such a ham, keep on hamming it up." Oh, kidding--no ham, no note. But it wouldn't have shocked me, they know how to feed you! Incidentally, Laura and I had to run to catch a flight, too. Our connection arrived late in Atlanta and we had 8 minutes to get to our gate--in another terminal on the opposite side of the airport. It was an all-out sprint; Laura in heels, me in a wheelchair. Thank goodness they held the plane for us. Most flights were cancelled the next few days due to that snowstorm that shuttered the city. Whew! Great to have met you, and look forward to doing it again.

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  7. Jodi, this sounds awesome! Glad you were representing MA and had a good time.

    I'm looking forward to the post on what was discussed, but don't stress yourself to get it up quickly.

    My Mom's switched from Avonex injection to an oral MS med (not one I've heard of). She's not missing the shot at all, which is great. I'm hopeful that she'll have a fit with a pill and will not have to go back to injections.

    Also, in a small world moment, I realized a blogger I follow is also friends with you. (Kate from Another Clean Slate) I need to get more involved in the blogger meet up scene. :-)

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  8. Alarm snafus give me the shakes just reading about them! The rest of the event looks fabulous though. It's nice to get an invite to something like that and then truly feel like you've been heard.

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  9. ooks like such a great event! Glad you were able to go and being able to give your feedback.

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