http://www.bafound.org/event/2016/05/11/2016-lobby-day-washington-dc
Woohoo! I’m going! Hope everyone here in the States starts calling their Senators and Congressmen. Have your families contact theirs as well. The more we press, the more they will listen, squeaky wheel and all that! Hope to see a lot of people there!
Just thought I’d let you know we saved hundreds of dollars booking our flight early. I’m excited my partner will be flying with me. Both of us are flying for less than what it cost me to fly alone last year.
If you can’t go what can you do? Contact your Representative and Senator! Get everyone you know to contact theirs as well. The more the wheel squeaks, the more it is noticed.
There’s something I read about getting 100,000 signatures for the President to take notice. And something about doing it electronically. I guess that really means the Presidents office. But maybe someone who knows more than the song from School House Rock (I’m just a bill…) could chime in.
This is what I’m doing to get prepared. Walking up and down stairs. Walking. Walking. Walking. Did I mention walking and stairs? I stretch before I walk.
I don’t know how it will be this year. But last year there was a lot of walking and stairs. Everyone met with the lawyers that was helping us out the night before and they told us what to expect and gave ideas on what to talk about as well as brief etiquette on meeting the elected official or their aide.
The next day, we went with a lawyer, Tim, who took us around. And thankfully Christine Buckley was with us as well. She really knows the BAF and can give information out like a computer.
Our group from NC met our Congressman, Patrick McHenry, at his request. He actually talked with us. We met another Congresswoman from the other side of the State. We met with a Senatorial Aide for one of our Senators. A member of our group met with the other Senator’s Aide. We met some other Aides from other Senators who support our quest in getting Brain Aneurysms acknowledged. We had lunch - they don’t allow food and drinks where the offices are. Don’t bring any, they make you throw it out before you go through the metal detectors. They do have a decent cafeteria with reasonable prices. There are also elevators if stairs aren’t feasible. We each told our story and why it’s important to us to get the bills passed.
Last year, I focused on educating Dispatchers and Emergency personnel from EMS to ER; as well as research for children. I wrote down some statistics from BAF, looked up population in city, county and state and with help converted those percentages into numbers on how they directly relate to my state. I kept them on index cards in my pocket. I also tried to figure out something that would open the person’s eyes on a personal level to try to get them to buy in. I couldn’t always do the math conversion, but I’d tell them, you figure it out.
That night we met with many people and shared our experiences. It was a great time!
So I’m saving my allowance…to entice every US citizen from this group to come to DC and help get the word out. Just think about it, you can see a beautiful building, our nation’s Capitol, all the architecture, etc. If that’s not enough, you can meet me and listen to how much I’ve improved my speech. And if I can afford it, I’ll buy you a drink, from apple juice to a glass of wine. Your choice…If there’s too many of you, it might be water from the faucet, my allowance is meager 
Talked to Congressman McHenry himself today, on one of his telephone town hall meetings. I shared we would be back up in DC to meet with him and he is looking forward to it. I hope he can make the time for our group again.