Monday, January 23, 2017

Monday, January 23, 2017

Tonight's picture was taken in January of 2009. We were in NYC to start Mattie's experimental treatment at Memorial Sloan Kettering and thanks to Mattie's art therapist, she secured us tickets to the Lion King on Broadway. Along with back stage passes to meet the cast. This particular cast member was truly lovely with Mattie and all of us. Not pictured, but was with us, was my lifetime friend Karen and one of Mattie's babysitters who lived in NYC. Karen was our support system when we came up from treatment in NY, and one thing was for sure, we always needed a lot of support. 


Quote of the day: The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.
 ~ George Bernard Shaw

This morning our press release through Business Wire was released on the internet. You can see it by clicking on the link below. I know this may look easy, but I can assure you EVERY aspect of getting this press release done was a pip! Not only did we have to write it, but to get quotes from congressional offices is a process, and not a one step process either!!! The press release highlights messages from all our co-sponsors of the Roundtable, which was important to us.  

http://www.businesswire.com/news/home/20170123005139/en/Policy-Roundtable-Held-Psychosocial-Standards-Care-Children


I honestly do not know how many more days left I could manage. I am wiped out from planning this Roundtable. The logistics were HEAVY. Not only is there coordination of people presenting, making hotel arrangements, date of the event arrangements, but then on top of that there are rules and regulations of doing an event on Capitol Hill. I admit to having issues with such rules when I feel it will impact my event. I will give you a case in point. At our Roundtable many of the speakers are using PowerPoint slides. I asked numerous people on the Hill about how these slides would be displayed in the room. They explained that all I needed to do was hook up my computer to their system and it displays on a TV screen in the front of the room. Given that they know their space, I made the assumption that the TV screen was large enough, so that the room could see what is was on display. Somehow my not trusting nature paid off because over the weekend I searched high and low on-line to find an actual photo of the room. I was able to find a youtube of it and when I did I was shocked to see a TV screen that in all really isn't much bigger than my computer screen. I literally lost it because we can't build presentations and dialogues around information NO ONE can see. So I asked Peter to track down a projector at his place of work for us to take to the Hill. I had to do this because the staffers weren't sure whether they could accommodate my request at the tenth hour (typically they need much more advanced notice). Mind you it is the tenth hour because no one mentioned that the size of the TV is really too small for the room. 

That was one of today's fun jobs, the other fun involved getting information on getting access into the building to set up for the event. The building doesn't open to the public early enough for us to get there to set up for the event. So we needed special accommodations to get in through their 24 hour entrance. But getting in means entering in at a completely different building and then going through their underground catacombs to get to the Roundtable building. Again this wouldn't be bad if we weren't carrying anything. But we have bags of materials, a laptop, a projector, a large collapsible promotional screen about Mattie Miracle, and the list goes on! Mind you large carts to carry things are also not allowed in the building. All I know is I am ready for this event to be over from a logistical standpoint. I am signing off but hopefully I will have positive news to report tomorrow night!