Thursday, March 8, 2012

JDRF Government Day - training days

I just returned from Government Day in Washington DC.  It consisted of four days, two days of training and two days of meeting with legislators.  It was full of fun, inspiration, socializing with interesting people, the excitement of meeting with people who can make a difference.

Arlington cemetery
I left early in the morning and arrived at the hotel in DC at about noon.  I checked into both the hotel and the conference right away.  There were lots of people there, but none that I knew.  I had a one on one meeting with Jill G., who is the regional co chair of the Promise campaign.  We had emailed and spoken on the phone numerous times, but had never actually met.  She was very nice and got me off to a good start.  She also helped me meet some others advocates from Ohio who I would be spending some time with during the conference.  While I was sitting in the lobby reading over the handouts I had received, Hasan Shaw, the JDRF grassroots advocacy manager asked if he could do a video with me for the website.  He was looking for someone who was here for their first time and I was available.  Here it is.  I also slipped away for a walk around the hotel. It turns out we were very  near Arlington cemetery.

The Ohio people all went out for dinner together.  We took a bus into the city and had a nice dinner at an Italian restaurant.  It was fun getting to know each other and sharing our stories.  Afterwards, we went to the hotel bar and met some of the other people.  Everyone was so interesting and of course, we all had a lot in common.

Breakfast was at 7:30, so it was a short night.  I got some breakfast and coffee and carried it into a big meeting room.  I didn't see any familiar faces, so sat next to the person that I had walked in with.  It turned out to be Karen from Bitter~Sweet blog, one of the very people who I was hoping to meet.  We had a nice time talking about our blogging experience.  She is just as nice in person as she seems on her blog.  

Then came the introductions.  Each person introduced themselves and told their own diabetes stories.  Each story was unique and interesting.  There were several families that had two diabetic children, and one with three.  Probably the one that got to me the most was a mother who says that she holds her breath each morning when she goes in to wake up her son.  She always begins the day by checking that he is breathing.  All of the parents spoke of setting alarms to check blood sugars multiple times each night. Several of the type 1s have been diabetic for many, many years.  But in all of the stories, no one was really complaining or asking for sympathy, just telling the specifics.  Very typical and illustrates one of the reasons that most people don't know a lot about the more difficult challenges of living with diabetes.

Next came the information that we needed to prepare for our visits to the legislators on "the hill".  We talked of our goals and some of the issues that we would be explaining to our congress people as well as what we would be asking of them.  We would be asking for renewed funding for the Special Diabetes Program.  This is a program that funds research funding through the NIH for projects involved with things like genetics, environmental triggers, complications, glucose control, and several other issues (like my transplant!).  We also talked about the artificial pancreas project and asking for funding for the NIH and the FDA.  We would also be asking each legislator to please join the diabetes caucus.

An update on the Promise campaign was encouraging.  We are getting close to our goal of 432 meetings.  I have my last one on Tuesday.

We were then given the choice of which sessions we would like to attend.  I chose one on building leadership and one on what to expect at our meetings with congress.  Both were very helpful.

All of the Ohio people then went out for dinner.  We ate at Chef Geoffs and had a great time together.  Afterwards, we walked around the area and ended at the White House.  It was a fun evening.


Camille said...

Hi Kathy! I am so glad you could join us. I only wish I could have spent more time visiting with you. You have so much important experience to share.

This is a big year---renewing the Special Diabetes Program is all-important ensuring that this special stream of funding continues. The insulin pump, the CGM, the recent therapies of curing and actually reversing diabetic retinopathy and identifying the markers that can predict (so we can predict) end-stage rental therapy--these all came from research funded by the Special Diabetes Program.

Thank you for your advocacy, Kathy. Keep up the good work. (and give me a call : )

Karen G said...

Sounds like you had just as fabulous a time at Government Day as I did - it was so inspiring and it felt so good to know we are really helping to make a difference. I'm thrilled that we not only got to meet, but were able to share breakfast together and have some time to chat. I hope to see you again soon!!

shannon said...

i found your blog through a link on karen's. thanks for writing about your time in DC. i look forward to learning more about your experience with the islet transplant. (perhaps in your archives?)