Novartis Blogger Summit

As most of you know this blog was started long before tuberous sclerosis or epilepsy was part of our life. The reasons for starting it were quite vain to be frank. I thought people out there would want to know weekly what I was craving and how much weight I had gained through my pregnancy..What was I thinking?? Turns out this would later be a place that I could update everyone on how Madilyn was doing. It became a place that I could write down thoughts that I was unable to speak, it became a place where some of my deepest and darkest fears were placed, and it became a place of refuge to feel as if I could say what I needed without being interrupted.

All of that being said...You can imagine my shock when Novartis Pharmaceuticals asked if I'd be interested in attending a blogger summit in Short Hills, New Jersey. My first thought was, have they read my blog? Do they know that I'm not a "real blogger"?? Why do they want me to come?? There were a ton of thoughts running through my head but before I could ask any of those I said, YES!

The timing was actually poor since I had been traveling most of February and March, but I couldn't say no to something like this. I didn't really even know what this was, but I know I'd kick myself later if I didn't find a way squeeze it in the traveling schedule.

So off to New Jersey I went! I had no clue what to expect, I was given the names of the other women who were going before leaving. I knew most of them and found myself on their blogs leading up to my arrival. You can find their amazing blogs below-

Becky Gaunt- Mixed Up Mommy
Laurisa Ballew-  Land of La
Tina Carver- You Don't Know Jack
Stephanie Lanier- Lanier Landing 


Once I landed I was picked up by a nice gentleman(who held a sign with my name on it..aghhh) who shuttled me to our hotel. I must admit I was nervous... I still didn't know exactly what we were doing here... I started to second guess myself coming!

Not long after my arrival the other women started coming in and we quickly got acquainted in real life :) You see I had only met one of the women in person, the others I felt like I knew very well but only through their facebooks and blogs. It was so so refreshing to sit in a room full of other mom's who knew the battles you have faced or were going to face. We didn't have to explain anything to each other.. it was all just understood. We didn't feel guilty for talking about the crappy parts of our journey and we didn't feel pity. It was soooo refreshing to be in a room full of women who just got it!
 
After catching up we found our way down to a dinner that was hosted by Novartis. We got to know them by playing some ice breaker games and enjoyed a wonderful dinner. After dinner the girls helped me travel into the city...Yes, New York CITY!!! I was so excited and very thankful they were up for a late night trip. We all jokingly said we hadn't slept in years so why not! It was wonderful getting to meet up with another TSC mom who lives in the city. She graciously showed us around and we had a night of laughs and lots of walking. We got back to the hotel room after 2:00 am ready to see what the next day would bring.

Without going into too much detail, I have to say I was pleasantly surprised at how wonderful the day of conference was. They asked us questions about our journey with TSC, what was helpful, what wasn't and how could they help with different resources. It truly felt as if they genuinely cared. And like one of the other mothers said, there weren't any other pharma companies asking how they could help so it was nice! They provided us with knowledge on some of the resources they currently offer and then spoke with us about some that could be coming to us shortly.


Some of those awesome resources can be found here;

Turbo and Scott graphic novel and story book
These books seem to be more for siblings, friends or even other kids around children with TSC. It might be a little too much for those smaller children like Maddie but I can see it being a great thing to have to help educate those children around her.

Resources for Afinitor
This will be a very helpful site for those who are on Afinitor. There is a co-pay card and also a personalized support through treatment and insurance.

(We were not told to share these resources, but I do believe they may be of help to my fellow TSC family)

All in all this trip was amazing. The time spent with the other women was exactly what my soul needed. I truly became very close to them in a short time and feel a very special bond was made. I will definitely remember this weekend for a long time! I'm so thankful for the opportunity to be involved and very thankful Novartis cared enough to listen to us crazy moms!

That's all for now! Make-A-Wish blog coming soon :)



*While I was not paid for my time at the summit, my travel, hotel and food expenses were paid for by Novartis.*