A Mother and Daughter’s Experience at the JDRF’s Children’s Congress

Posted by leighann on Thu, 02/26/2015 - 09:35 in

You may think of the JDRF for their research for a cure for type 1 diabetes, their work with the artificial pancreas and their annual fundraising walks throughout the country. However, they also focus efforts on advocacy in the form of their Promise to Remember Me meetings with congressmen and women and their bi-annual Children’s Congress in Washington, D.C.

According to the JDRF website, “Every two years, more than 150 children living with type 1 diabetes (T1D) gather in Washington, D.C., to meet face-to-face with some of the top decision-makers in the U.S. government. The children, ages 4 to 17, represent all 50 states and the District of Columbia. The delegates in JDRF’s Children’s Congress enjoy a once-in-a-lifetime opportunity to help Members of Congress understand what life with T1D is like and why research to fund life-changing therapies until a cure can be found is so critical. They speak up on behalf of the millions of people living with T1D and the families and friends who love them.”












Avery Addington and her mom Hallie, author of the website "The Princess and the Pump", were chosen to attend JDRF’s Children’s Congress a few years ago when Avery was seven years old. They share their experience with us below. First we hear from Hallie.

 Leighann:  In what ways, if any, are you active with your local JDRF chapter?

Hallie:  I am a board member for our local JDRF. In the past, I was the Government Relations person for our chapter. I'm now on our advisory council and am involved in lots of different events like the walks, galas and other outreach events. I'm also a mentor and Avery is a youth ambassador.

Leighann:  What made you and Avery interested in applying for the Children’s Congress?

Hallie:  Avery fell in love with Washington, D.C. when she went to Government Day with me when I was the Government Relations person for our chapter. We decided to make a little family trip out of it so Avery and Jason (Hallie’s husband) came with me. They were able to attend the meetings with our members of Congress. She was only four years old, but she got hooked! As did I! It was such a wonderful experience that when she was able, she really wanted to apply!

In fact, we told her she could apply for Children’s Congress or we could go to Friends For Life in Orlando. She LOVES Florida and we expected her to pick that! But even though she knew she might not get picked on her first attempt, she wanted badly to go back to Washington with JDRF. She had also attended lots of our Promise and New Member meetings, so she was very used to advocacy and knew what to expect. I think that really made her interested in Children’s Congress! She knew what it would be like and she loved it!

Leighann:  Did you have any “homework” to do before going to D.C.?

Hallie:  Before going to D.C., we had to write letters to our members of Congress. We also made videos and created a scrapbook that we left with our representatives and senators. The scrapbook showcased her life with diabetes - what it's like and why she wants and needs a cure. We left the scrapbook with our members of Congress in hopes that they will be able to put a face and name with the issues they are voting on. When legislature that affects diabetes comes to a vote, we want our members of Congress to remember our kids and their stories.

Leighann:  Tell us what kind of activities you did while at Children’s Congress (CC).

Hallie:  Once at CC, it was a whirlwind! That evening was the welcome dinner where the kids all got up on stage and introduced themselves, told how old they were, where they were from and when they were diagnosed. That was an incredibly powerful event! On day two, we got packets and had sessions that taught us about the Special Diabetes Program (SDP) and how to have an effective meeting with your member of Congress. JDRF does a great job teaching you exactly what to do and helping you feel very comfortable with what you will say.

We had a celebrity town hall where the kids got to listen to, ask questions of, and meet celebrities living with type 1 diabetes. There was also time for the kids to hang out, get to know one another and have fun together. Then you're off to Capitol Hill to do your thing! It goes by so fast! It's a jam-packed couple of days!

Leighann:  Why are celebrities with diabetes also in attendance?

Hallie:  I believe the celebrities are in attendance to help show the kids that they can do ANYTHING they put their minds to! Diabetes does not have to hold them back. The celebrities are real-life examples of this! It's no longer someone on a TV screen. It's a person who they get to talk to! I think it's a great way to empower and inspire the kids!

Leighann:  Even though this program is for children, as a parent, how did it affect you?

Hallie:  Having been involved with the Government Relations part of JDRF through my participation in Promise meetings and Government Day, I thought I knew what to expect. But CC still blew me away! There is something overwhelming and inspiring and hope-filled about being with so many other people who share your experiences with diabetes and can relate on that level. Seeing all those kids who are brave and articulate and all working together for a cure is very moving. It makes you want to work that much harder!

The kids really get a sense that their work and their voices are important. I think that’s the best and largest take away from our experience - our voices matter. It doesn’t matter if you’re adult or if you’re seven - your voice makes a difference. Your story makes a difference. And you are capable of doing something that gets us closer to a cure for type 1 diabetes.

And now we hear from Avery about her experience:


Leighann:  What was the best part of the Children’s Congress from your perspective?

Avery:  The best part of Children’s Congress was being with lots of other kids with diabetes. It’s pretty cool to be in room with lots of other kids like you. When you’re at home, there just aren’t that many other people with diabetes. It’s neat to see so many other kids like you. It’s cool when everyone has to test before eating and to see carb counts with the food. And lots of juice! I liked meeting new people and making new friends. One girl I met had a service dog and he was really awesome!

Leighann:  Did you do any interviews when you returned home?

Avery:  I got to do a bunch of interviews when I got home. I loved that! It was fun to talk to people about being in Washington and what it’s like to have diabetes. One interview was at my gymnastics studio and I got to show how I can do gymnastics even with diabetes. Talking about all the fun things I did made me want to go back and do it again!

Leighann:  Does your experience with the Children’s Congress inspire you to think about politics or advocacy as a career? Don’t worry, you don’t have to choose your college major just yet!

Avery:  I would love to go back to Washington again! I think it would be fun to work there one day! But I think I want to be a science teacher. Maybe I can do both!

Leighann:  What’s your advice for other kids with type 1 diabetes who are interested in applying for the JDRF Children’s Congress?

Avery:  My advice for other kids who might want to go to Children’s Congress is to DO IT! It’s so much fun and you won’t ever forget it! Don’t be scared to talk to the Congress people. They are very nice and sometimes will give you tours behind the scenes. Some of them have diabetes, too! One of the guys who works for Representative Chabot has type 1 and he showed me his pump! That was cool. They are very nice and you don’t have to be scared. You can do it!

You can learn more about "JDRF’s Children’s Congress" by visiting their website. And Hallie and Avery share more about their experience, including lots of great photos, on "The Princess and the Pump".

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