Monday, July 16, 2012

UMDF Day on the Hill Recap- June 14th, 2012

This is a long overdue recap of the UMDF day on the Hills
First of all I must say it was a very difficult decision for me to decide if I should go to DC or not.
I really hated leaving Annett and Jagger in the ICU, but since he had a good night and was just on flow (no oxygen), I figure I could go. And DC is not that far away so if anything should happen, I could get home pretty fast.
Looking back at it, everything went well with Jagger and it was a very good event to attend, I learned a lot and met some amazing doctors and Mito patients/families. 
So on Thursday June 14th I got up at 5 am, and Jagger had a good night, with no extra need for oxygen, so I got ready and left for the airport. Once I got to DC, I drove to the hotel but could not check in so I had to finish getting ready in the hotel bathroom, that was interesting for sure! LOL
I then took the train to the city (the symposium was in the suburb) and I met the team in our hospitality room in the Cannon house building. I met with Cliff from the UMDF, it was nice to finally meet in person after weeks of emails back and forth. I had a quick abbreviated training on what we are trying to accomplish on the Hill, and I was on my way to the Longworth House building for my meeting with Congressman Hank Johnson’s office. The Congress was in recess, so the congressman was actually back in Atlanta, but I was able to meet with his senior advisor Mr. Ossoff.
The meeting went well, and I was able to share Jagger’s story and a few pictures.  Mr. Ossoff was very receptive and asked if the congressman could help us on any level, such as writing a letter to help us get into the drug trial if necessary. It was a very nice offer for sure. I also shared the news about the newly formed Congressional Mitochondrial caucus and asked him to check if Congressman Johnson would be willing to join that caucus. (more details on that and our Senate resolution in the UMDF advocacy blog entry).
Once my meeting was over, I went to the Senate side to meet up with all the other Georgia participants to meet with Senator Chambliss. Let me tell you, it is very hot walking around DC in a suit with 90 degrees outsideJ

Our first Senate meeting was with Senator Chambliss, but he was called into a Senate intelligence meeting at the last minute, so we met with his health care affairs senior advisor, Mr.Gerakitis
There were 14 of us, but a good mix of people, family with kids affected, adults affected, parents of young children affected and teenagers affected. We explained a little about Mito and our daily struggle and asked Mr. Gerakitis to ask if Senator Chambliss would co-Sponsor Senate Resolution 490. We kind of got the runabout and no real indication that Senator Chambliss will Co-Sponsor the resolution at this time. We will follow up with his office and maybe if enough people write/email/call maybe we can influence the decision.
Our next meeting was just 3 stories down at Senator Isakson office. We met with one of his senior advisors Mr. Phiniezy. The meeting was very similar to the previous one and while a little more positive we could not get a commitment at this time, so we will have to make sure we follow up.
My first impression was that it will be a lot harder to get any commitments from the Senate side than the House side, but that is usually the case most of the time.
We then walked to the bus to get back to the hotel in Bethesda and had a recap meeting with the entire group.

The ride back took about an hour, but I was sitting next to M. (Dr. Ke husband) and we had a great conversation. I also met one of the Mito mom I have been talking to on twitter for a few weeks now, so it was nice to meet Kristi in person. (She has a lot of great info on her website
Once back at the hotel, Cliff from the UMDF lead the recap meeting, and the consensus was that it was a very successful day and we were able to reach a large number of congressman/woman and senators. We even had one senator (Senator Menendez, NJ) agreed to co-Sponsor Senate Resolution 490 on the spot.
Cliff stressed the importance of following up and sharing the info about the  House caucus and the Senate resolution with all our friend and to post it on social networks. So please take a look at the UMDF advocacy blog entry and see how you can help us spread our message.
I went to Chili’s down the street to grab some dinner. Back at the hotel, I went over the schedule again so I could make sure I know what session to attend on Day 1 of the family program.

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