This past week, JDRF announced their selection of the newest Children’s Congress Chairmom and also launched the application process for Children’s Congress 2013. Big news in the diabetes world, if you are a family with a child with T1D. And yet, the program and all it entails is still new to many.
Since I was lucky enough to have my daughter serve as a delegate way back in 2003 and was selected to serve as Chairmom in 2005 (I’m still shocked!), I thought I’d take some time to talk about what Children’s Congress means, what it does and why it pays off in dividends to even apply.
What is Children’s Congress? JDRF has a website dedicated to CC, but I’ll put it in my words. CC was the brainchild of a child named Tommy Solo (well Tommy’s actually a grown up now, and a really cool designer btw!). Tommy’s mom, Pam, and his godmother Gail, were very involved in JDRF and in advocacy. One night Tommy said to them “Hey – if we kids are the ones you are trying to help, why don’t we kids be the one who go to the hill to advocate?” And there, in that moment, CC was born. The first one was in 1999. With Mary Tyler Moore and Chairmom Sandra Silvestri at the helm, 100-plus kids went to Washington to advocate, sing on the hill and see what happened. Here’s what did: media attention around the world. Senators and Congressmen connecting to the research funding message in ways they seldom had before. Visibility for diabetes cure advocacy soaring to new heights. It was clear this was a great idea. From there, CC has grown. In 2003, it briefly had 200 children go, but settled back into 150 from 2005 one, since that is a number that works well and is manageable. Each two years, those children (between ages 4-17; used to be 2-17 but it was just too hard on the families of itty bitty ones) work hard to bring the message of all who care about a cure to the hill.
The event goes like this: Families arrive and meet at a welcome dinner, where the chair sets the tone and each child is individually introduced. The next morning families are up bright and early to rehearse the song “Promise to Remember Me,” to learn all the updated information for hill visits and to learn how exactly to be on Capitol Hill. Usually there is something called a “Town Hall Meeting.” When Lauren was a delegate it was with Health and Human Services Secretary Tommy Thompson. Other years it’s athletes with T1D who share their story. Last time there was even a Supreme Court Justice. It’s a moving, amazing and empowering event for the kids. But CC is really about giving, not getting, so the kids work hard. That afternoon they sing outside the Capitol to raise awarness. And then next morning they take part in a congressional hearing on diabetes, then visit with each of their elected officials to tell their personal story. Then, it’s time to go home. A whirlwind. The schedule can change from year to year, but that’s the basic outline. It’s tiring, exciting, educational, motivating and just plain awesome.
Who gets selected? Okay so here is the thing: CC has become so popular, literally thousands of children apply. Having served on the selection committee, I can tell you this with all confidence: 99.9 percent of them deserve to go. Whittling it down to 150 kids is heart-wrenching. But it has to be done. So what makes a good delegate? This is just some parent to parent advice: if your child is over 9, they should be driving the application process. Help them learn about it and think about what they can bring to it and then encourage them to write their own letter. Even if it’s not as perfect as you’d like it, the child’s voice speaks to the Congress. Let it be heard. Plus, it’s a great educational experience for your child. As far as what to say? That’s your child’s decision. They should tell their story and talk to Congress about why a cure is important to them. From there, part of selection is luck. Many districts become “important” as time goes on, and CC wants to have a child from that district in DC to help get research funded. I will say this with all certainty: you absolutely can be a part of CC if you are not a million dollar donor. Does it help to have taken part in things in the past? Sure – but that can be as simple as the fact that your child attended a Promise To Remember Me meeting or helped another child with diabetes in their school. Advocacy is advocacy, and it all means something. But it does not mean everything. All I can say is trust the process, tell your child there is a good chance they won’t get selected and cross your fingers.
So why apply if the chances are slim? Because, put simply, applying is not only an educational experience, but often a first step toward a child becoming a powerful advocate. I like to tell people that Lauren applied three times before being selected. In that time I was a JDRF Chapter President, an international board committee member, a major donor, head of a huge walk team and more. And you know what? They were right not to select us until they did. It worked for all of us to have the other people selected before us. But here is what happened: once Lauren learned about CC, she also learned about advocacy. That first year after not being accepted, she and I chose to attend our first Promise to Remember Me meeting. From there, she knew she was interested in it all. Pretty soon she was keeping track of what was going on in DC with research, what our reps were doing, and keeping in touch with them. But the time she was selected as a delegate, she was a seasoned expert in DC and politics. And I have to say, even if she was never selected, that would have been worth it. She is now majoring in Political Communications at a DC college – and I trace that all back to me saying to her back in ’99 “Well if you want to apply, let’s learn about what it means.” Encourage your child to apply and use it to learn how to step up no matter what the outcome. It’s worth it, trust me.
We also made a point in the years we were not selected to reach out to the selected delegates and offer our support and help. As I said, CC is a job, and a hard one. The selected delegates need us all to back them up throughout the process. If you are selected, you’ll be happy when families do this. If you are not, be the one to do it and make that family happy.
What we got from CC: I am still stunned we were the Chairfamily. I made a vow the day I was asked to always remember I was given that privilege and always do all I can to help support diabetes advocacy. Here are some things that have happened since then:
–Lauren was asked to testify at a joint senate hearing on research. Along with four scientists, she was the only patient from any patient group who was asked. It was amazing.
–Lauren was asked by Senator Ted Kennedy to speak about him in his tribute at the Democratic National Convention. It was a life experience. He also wrote her a college recommendation without her asking, and hosted her many times at special events. It was an almost unbelievable education for her — and our entire family. If you go to the Kennedy Institute once it’s done, Lauren’s voice is one of the ones that welcomes you.
–Lauren and I have taken part in every Promise to Remember Me Campaign since it’s inception in 2000. It’s our duty to show up and be heard. We will always remember that.
–The TV show Nova Science Now did a segment on our family. Kind of really cool.
–Lauren has decided to dedicate her life to advocacy and is studying to be the best advocate she can be. She’s rocking college because she is so passionate about what she wants to do. It’s really incredible.
-We’ve made friends who we’ll have for a lifetime and who will share this journey with us. How great a bi-product is that?
And again – if we had not been selected, I truly believe all this still would have happened. Learning about CC and applying to it back in 99 set our family – and my daughter with diabetes – on a path we continue on to this day. We’ll stay on it until the work is done.
So read up, learn along with your child, and encourage them to apply. Whether you end up making the trip to DC next July or supporting others who do, you’ll have joined a giant group of people who are changing the world. What better gift to give your child than the knowledge that he or she is the voice that matters most?