Sunday, March 18, 2012

JDRF Government Day - meetings on the Hill

After another delicious breakfast (they fed us well), it was time for the research update.  I had been looking forward to this session for obvious reasons and it was indeed very interesting. The research was divided into three sections.
These are the topics that are currently funded by the JDRF.

  • This included the use of faster insulins and glucose responsive insulin which would only be activated in the presence of glucose.
  • The Artificial pancreas project which is the focus of the current Promise campaign.  The FDA has recently released a guidance that will help get it to approval.
  • This includes the TEDDY study (The Environmental Determinants of Diabetes in the Young)
  • Genetic and environmental triggers of diabetes are being isolated and studied.
  • Trial net is the study that tests the family members of Type 1s to see if they possess antigens known to be associataed with diabetes.
  • People who have just been diagnosed are treated with immunosuppression therapy in hopes of delaying the onset of severe Type 1 diabetes.
  • Islet cell transplantation is currently funded by the SDP (90%).  It is hoped that FDA approval will help more patients have this option.
  • Micro and macro-encapsulation of islet cells is the next step.
  • Regeneration of beta cells is another direction.  Progenitor cells are a hope as is the reprogramming of alpha cells to become beta cells.

After lunch we boarded buses and headed for Washington DC.  Today we met with our state senators.  All of the people from Ohio attended.

Our first meeting was in the office of Sherrod Brown(D).  We met with one of his aides who seemed very interested in what we had to say.  It was very similar to a Promise meeting.  We all told our personal stories and then made sure that we asked for the support with specific items.  We asked each legislator to sign a letter of support for the Special Diabetes Program, to support the artificial pancreas project, to vote for financial support of the NIH and the FDA, and to join the diabetes caucus.  It was emotional hearing and telling our stories.  And the JDRF had us very well prepared with our talking points and our literature.  I felt that this meeting went very well.

Our next meeting was in the office of Rob Portman(R).  Again, we met with an aide.  She was polite, but not as interested.  When we asked for financial support she said that it is the Senator's policy not to support one disease over the others.  "It is too much like playing God".  That's hard to argue against and we could tell it wouldn't get us far.

We took a bus back to the hotel and arrived just in time to get ready for dinner.  We were served a nice dinner and enjoyed a nice program afterwards.  Jeffrey Brewer, president and CEO of the JDRF was the speaker and he gave a nice and encouraging talk.  Various awards were presented to some of the advocates.  I didn't know them, but judging by the smiling applause, they were deserving.  It was a very nice evening.

Tuesday morning, we had breakfast, packed up, and again headed for Washington DC.  Today we would be visiting with our Representatives.  We were able to meet with Rep. Latta(R) in person.  He was as friendly and interested as he was in our Promise meeting last fall.  For Reps. Kaptur(D) and Jordan(R), we met with their aides. Both were eager to hear our stories and were attentive as to what we were asking.  Rep. Kaptur had already performed all of the things that we were asking, so it was just a nice time to visit and talk about the importance of our mission with her aide.

After my meetings, I walked around for awhile just taking in the sights and then suddenly it was time to get to the airport and come back home.  The trip was pleasant and I enjoyed just sitting quietly and walking around the airport thinking back on the previous four days of adventure.  I met so many interesting people that I hope to remain in contact with and learned so much about advocacy.

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.