MDMommy Goes to Washington

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I just returned from a few exciting days at a JDRF conference in Washington DC, where we advocated for our Congressman to continue to support diabetes research. You may ask how did this happen, given that you know I haven’t left my children for more than a 24 hour period since they developed type 1 diabetes (T1D)? Up until now, my involvement in JDRF has been both community outreach  and fundraising . A few weeks ago ,Michael, the Government Relations rep from our chapter notified us that he would be unable to attend this annual meeting and asked if anyone would go in his place. With the sequester and sensitive economic climate, it was important that we were represented.  Why not? A few days away with like-minded people advocating for a cause so close to my heart? Sure. As far as speaking to members of Congress, I looked forward to the opportunity. My father is an elected official; he has been a judge for over forty years. I have been speaking with politicians and strangers my entire life. Most importantly, the kids were finally stable enough for me to consider the trip. I started planning as soon as I cleared it with my husband Adam. I would be away for about 3 days.

The experience was…powerful. About 200 attendees from all over the country to represent people with T1D. The days and evenings leading up to our Capitol Hill meetings were packed with sessions and workshops.  One session gave everyone the opportunity to stand up and briefly introduce themselves and their connection to diabetes. We were not all parents of diabetics. Many people had diabetes themselves or were there for their affected spouses, siblings, grandchildren, cousins, nieces, nephews or friends. Unfortunately, many fit into more than just one of these categories. I was both moved and saddened by this. It was inspiring to feel the energy and commitment of this diverse group, but many stories demonstrated the tremendous impact of diabetes on the entire family. Not only is T1D a complicated disease, but it carries a strong genetic risk for future generations. There is strength in numbers, however, and we felt solidarity as a group in DC.  As a woman from Iowa said “the synergy in this room is palpable.”

The general tone of the conference was one I would call “optimistic realism.” We learned more about research developments like the artificial pancreas project as well as a new “smart” insulin and different ways to reboot the immune system so it won’t attack the insulin-producing cells. Most of us had heard about this research before, but was good to hear the progress.  I met some amazing people and heard firsthand some very interesting things: One woman was expecting to get a diabetic alert dog and other people were using new monitoring technology that I’ve been considering for my own children. A female attorney showed me the ankle holster where she holds her pump (what a great idea!). During the catered buffets and open bar receptions, we were able to relax, network and share some of our zany diabetes stories (see my favorites in a previous post  http://mdmommy.com/?m=201210).

It was great not to be “first call” for all the monitoring and planning at home, although my phone allowed me to be a close second. “Do I believe the packaging on the bag of GF bagels? 50g each? And Sam has running low in the 40’s tonight, I’m a little nervous about him going to sleep.”  A few of us got calls from our spouses during Sunday dinner asking what to pack for lunches and what they should tell the school nurse. We were in good company. We were keenly aware of the pervasiveness of diabetes and how it seeps into every aspect of our lives. But I felt that we had all been processing this for a while, and so we took comfort in knowing that the treatment of diabetes will only continue to get better and easier, until we have a cure. “Less Until None” was the motto used during the conference.

My favorite quote of the weekend was during the presentation of a remarkable woman, Suzy Watkins, who had used the artificial pancreas as part of a recent study. Recognizing the amount of thought  and decision making a type 1 diabetic makes on a daily basis, she asked “What will we do with the collective brain capacity of diabetics once a cure is found?” she asked. “We’ll find a cure for cancer or …(another disease)..”  It was a privilege for me to be among a group of such bright, thoughtful and dynamic people.

As far as the meetings on the Hill, they went well and we were appropriately exhausted at the end of the day. My only complaint about the weekend … I was really hoping for cherry blossoms since it was March in DC rather than the rain/snow/sleet we had. Oh well, there’s always next year. I’ll  have to come up with another excuse to take Michael’s place and have Adam watch the kids. Hmmm.


8 thoughts on “MDMommy Goes to Washington

  1. So very proud of you, Debbie. Your ability to advocate not only for your own children, but for all who are affected by JD is amazing. You are an inspiration, even to those of us who don’t personally have a JD story to share. You are following in your Dad’s legacy of service. What a blessing – rock on!!

  2. It sounds like you had an amazing experience!!! We were well represented by your attendance!!! Thanks Debbie 😉
    L,
    Theresa xo

  3. Deb,
    Good for you! It seems increasingly clear that mastery of any situation involves both addressing our private troubles as well as achieving some form of public acknowledment.
    Risky but its nice to hear that you took the risk and it provided a reward.
    Nancy

  4. JDRF Advocacy was lucky to have you on the hill. Only other T1D families can understand the daily struggles to manage the unmanageable. Thanks for your help!

  5. Debbie,
    It was so nice to meet you in DC! And I didn’t know that you were a blogger too!
    It was a fun and emotional time. Its such a unique opportunity to be in a place with so many other people who have the same strong and heart-felt goals. I don’t know how you D-Moms do it. And your medical perspective gives you and interesting spin too. I think you give people the opportunity to think (or say) that if a pediatrician can’t obtain perfect BG control, then maybe this really is quite the challenge that it seems to be….. One of my fears is that I’ve been missing something obvious for all of these years.
    Best to you,
    Kathy

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