JDRF Children's Congress Archives • D-Mom Blog

September 5, 2018 by Leighann

JDRF Children’s Congress: 2019 Application Open

This week JDRF opened up the application process for the 2019 Children’s Congress. JDRF 2019 Children’s Congress will take place on July 8-10, 2019, in Washington, D.C.

From the JDRF Children’s Congress 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.”

Apply on the JDRF Children’s Congress website.

Read my “Thoughts on How and When to Apply” for JDRF Children’s Congress.

JDRF Children’s Congress: Thoughts on How and When to Apply

I know it seems like the summer of 2019 is a long way off, but JDRF has opened up the application process for the next Children’s Congress. Now is the time to start thinking about if you want to apply and how your child can be a more qualified candidate.

I will give the caveat that I in no way have anything to do with the selection process or know what they are looking for in a candidate; these are just my opinions based on our own experience applying and participating.

Age

Children’s Congress selects children with type 1 diabetes who will be aged 4 through 17 at the time of JDRFCC. Q was almost 11 when she attended, and I think that was a good age for her. She was able to make friends, tell her own story during our meetings, and introduce herself with confidence on stage. The teens also seemed to form a really tight group throughout the conference.

I know that younger kids have the “cuteness factor” and that it’s heart-breaking to see little, little kids who have to have injections and check their blood sugar. I know the cuteness factor can go a long way to persuade legislators that we need funding for research and access to care. But the days during Children’s Congress are LONG. I saw many a young child asleep on their parent’s lap. Some younger kids were too shy or overwhelmed to introduce themselves on stage. And there was A LOT of fast-paced walking when we were on the hill. We had to go from one end to the other and back again with a short time between meetings. Consider if you are applying because you want the opportunity to advocate or because your child wants to advocate. Consider whether your child is at an age that they can have a meaningful experience and if they will fully remember the experience.

Apply Multiple Times

We applied twice, and Q was selected the second time. While some children are selected the very first time they apply, some kids apply multiple times before being selected. Again I don’t know the selection criteria, but I think that sometimes decisions might be based on the number of applicants from a state or congressional district and might also be based on key members of congress who they need to reach.

Not to mention the fact that many, many fabulous d-kids who all deserve to go apply for each congress. It must be heart-breaking for the selection committee to say no to the vast majority of kids who apply.

Boost Your Application

I’m not saying to fabricate or exaggerate in your child’s application but think about ways that can make your child a better candidate and things that your child is already doing to raise money or awareness or provide support.

Since this is put on by JDRF, think about ways that your family or your d-kid is involved in JDRF. Are you a JDRF mentor, do you participate in walks, do you lead support groups, has your d-kid raised money or raised awareness at school or in the community?

Q and I attended a JDRF Promise Meeting with a congressman between her first and second application (not because we were thinking about the application, but because we wanted to do this outreach). Now is a great time to sign up to attend a Promise Meeting… even if you aren’t thinking about Children’s Congress. When we met with our congressman in his DC office, he remembered Q from our Promise Meeting in our hometown. A promise meeting is a good time to let legislators know why it’s important to think about children with diabetes when they make big decisions by sharing your child’s story.

The Essay and Application Questions

The first time Q applied she was too young to fully write her essay and answer the application questions. The second time around, I let her run with it. She thought about each question and answered in her own words about her own experience with diabetes. I think this is an important part of empowering our kids with diabetes…they need to form their own viewpoints about what is difficult for them and what is important to relay to others. I think that an application in the child with diabetes own words is much more powerful than one written by the parent.

Of course the parent perspective is important, too, but I personally feel that this is a time for the kids to put themselves forward. Filling out the application and participating in Children’s Congress can give T1D kids their own voice, a voice that they can use for the rest of their lives to advocate for themselves and others.

One Family’s Experience

I interviewed Hallie Addington and her daughter Avery about their experience at Children’s Congress. You can read “A Mother and Daughter’s Experience at the JDRF’s Children’s Congress” on Insulet’s website.

In Sum

I hope that I didn’t sound like a Negative Nelly because that’s not my intention at all. I just wanted to be real about what it might be like for younger kids. I think it’s awesome that you and your T1D kiddo want to advocate (no matter their age).

I know you might be disappointed if your child isn’t accepted this time around. I wish that every single child with diabetes could experience Children’s Congress. But please know that just by applying you are advocating. Keep trying. Apply every single time you can.

Good luck!

More Information

Again, I am not part of the selection committee. These are my opinions based on our own experience.

Deadline to apply: November 30, 2018
JDRF CC Dates: July 8-10, 2019
Eligible Ages: 4-17

JDRF Children’s Congress Application

Promise Meeting Sign Up

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

(E-mail and feed subscribers click over for embedded video.)

March 28, 2016 by Leighann

The AAA’s of Diabetes Management

I was recently asked what I hope for in terms of diabetes management 10 years from now or when Q goes to college in (gah!) seven years.

I said that I hope diabetes management is less of a burden for her and less for us, as parents, to worry about, especially if she decides to go to college far away.

I am thankful that the Affordable Care Act means that she can stay on our health insurance plan until she is 26 years old. She will be able to have good coverage while in college and grad school, if she chooses, and while she is doing an internship or getting that first entry level job in her field.

I mentioned that I hope smart insulin is available because she might have to deal with fewer low and high blood sugars.

And the acme for us is the artificial or bionic pancreas.

No, a bionic pancreas isn’t a cure. But we feel that it will take away much of the decision making one with diabetes has to make every day and she will be able to eat and be active without worrying so much about high and low blood sugars. Plus, in college, she won’t have mommy there to respond to her CGM alarms in the middle of the night!

As much as we are looking forward to the bionic pancreas as the ultimate technological treatment for diabetes, there are three issues that we all need to consider. I’ve dubbed these the “AAA’s of Diabetes Management.”

AAA Diabetes Management

Available: There are several clinical trials of an artificial or bionic pancreas currently underway by several different research groups and companies using a combination of insulin pumps and continuous glucose monitors and algorithms. Dexcom has been pretty quick to get their latest CGM versions approved by the FDA, but approval might not come so quickly for a medical device that will literally keep someone with diabetes alive and could literally kill them if it fails. We hope that the bionic pancreas is FDA-approved and to market by the time she goes to college.

Accessible: As with any diabetes technology, not every insurance company will cover an insulin pump or CGM. If the bionic pancreas is not being covered by insurance companies, it will be difficult for patients to get it into their own hands.

A focus of the 2015 JDRF Children’s Congress, which our family participated in, was the access of CGM’s to those on Medicare. You might ask why it’s important for us parents of young children with diabetes to even care if a senior citizen with type 1 diabetes gets their CGM covered by Medicare, but it is important. Many insurance companies look to Medicare’s guidelines of coverage when determining what they will cover for their own policy holders. Getting devices like insulin pumps, CGM’s, and any diabetes technology and medicines coming down the pipeline covered by Medicare is important because of the trickle down effect. The Medicare CGM Access Act of 2015 would amend “title XVIII (Medicare) of the Social Security Act to provide Medicare coverage of continuous glucose monitoring (CGM) devices furnished to a CGM qualified individual. ”

As with any new technology, insurance companies may not provide coverage right away and may not grant approval for those wishing to start using it. It has been a fight for many to get insurance companies on board with insulin pumps and CGM’s, not to mention covering the number of test strips one reasonably needs to stay on top of their blood sugar. My hope is that companies bringing the bionic pancreas to market work with insurance companies to show that it has great results and is worth covering. Hopefully they can show that it lowers A1c’s, reduces diabetic ketoacidosis (DKA), reduces severe hypoglycemia requiring medical attention and the use of rescue glucagon kits, reduces long term complications such as diabetic retinopathy and neuropathy, and reduces incredibly costly hospital stays.

Affordable: It’s not enough that a new technology for treating type 1 diabetes is available if we can’t actually pay for it. For some families the financial burden of diabetes management can be catastrophic. Even for middle class families, the costs of insulin, diabetes supplies, and technology can eat into a family’s budget and savings. For PWD’s in their 20’s just starting out, there may not be disposable income to cover more than just the basics needed for care.

I am afraid that the patient cost of a bionic pancreas is going to be out of reach for the majority of people living with type 1 diabetes in our country. I do realize that it takes quite a bit of capital to engineer the hardware, fine tune the algorithm, put the system through clinical trials, and ultimately get FDA approval and get to market. I realize that companies need to recoup these costs and this usually means passing it along to customers. But a bionic pancreas system that is so expensive that most people can’t afford it doesn’t do much to improve the lives of people with diabetes.

My Hope: A bionic pancreas that can keep a person with diabetes within a tight blood glucose range without constant patient decision-making and intervention can have enormous positive effects on long-term physical health and mental health, both reducing complications and reducing stress and burden. As the various artificial and bionic pancreases come to market, I hope that they become not only available, but also accessible and affordable for those people with type 1 diabetes hoping to reduce the amount of focus that diabetes takes each day so they can live life more freely.

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JDRF Children’s Congress

Artificial or Bionic Pancreas

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Continuous Glucose Monitor (CGM)

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July 27, 2015 by Leighann

{JDRF Children’s Congress} Watch the Senate Hearing

The 2015 JDRF Children’s Congress culminated with a senate hearing led by Senator Collins focusing on people living with type 1 diabetes and addressing the recently renewed Special Diabetes Program (SDP) and the bill currently going through congress on CGM access for people on Medicare.

Here is a photo that Senator McCaskill shared on social media during the hearing:

Not your typical audience for a hearing. Proud of these kids living with Type 1 diabetes and here w/#JDRFcc @JDRF

A photo posted by Claire McCaskill (@clairecmc) on Jul 15, 2015 at 10:51am PDT

Watch the video:

(E-mail and feed subscribers click over for embedded video.)

You Might Also Like…

“Medicare’s Failure to Cover CGM at Odds With Other Health, Research Agencies” by Senator Collins

S.804 – Medicare CGM Access Act of 2015: Senate Cosponsors, House Cosponsors

Special Diabetes Program

CGM Medicare Bill

More posts about JDRF’s Children’s Congress

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More posts about Kids First, Diabetes Second book

July 20, 2015 by Leighann

Kids First, Diabetes Second Book: Advocacy

Since we are winding down from our trip to Washington D.C. for the 2015 JDRF Children’s Congress, I thought it appropriate to share a section of the book about advocacy. Our advocacy efforts wax and wane over the years. Sometimes we have a lot of time and effort and motivation to advocate. And sometimes we are so busy with our regular lives that advocacy takes a back seat. Here is the section called “Advocacy” from the chapter “Getting Involved.”

Advocacy

For me, advocacy takes on two meanings when it comes to diabetes. First, as parents, we advocate for our children, whether it’s making sure a 504 plan meets our child’s needs at school, or helping to push diabetes-related legislation, such as the Care of Students with Diabetes Act in Illinois, into law. These are acts we do on behalf of our children to better their lives. The second advocacy role involves educating and spreading the word. This might be done through interviews with local media about the lives of children with diabetes, giving a talk at a PTA meeting or teacher in-service about the signs and symptoms of diabetes to help people identify children exhibiting early symptoms, or meeting with your congressional representative through programs such as the JDRF’s Promise to Remember Me campaign.

Advocacy can help your child directly by making sure he or she is safe at school, or can be for the greater good by encouraging politicians to continue federal spending on research and programs benefiting those living with diabetes. Part of advocacy is identifying the key issues and deciding which ones appeal to you personally. JDRF’s advocacy site is a good place to start (advocacy.jdrf.org).

Perhaps one of these topics piques your interest:

Special Diabetes Program (SDP)
Healthcare Reform
Artificial Pancreas Project
Stem Cell Research

When you’ve identified an area where you might become an advocate, it’s time to read up, do some research, and find other people championing the same cause. As Margaret Mead said, “Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”

And advocacy isn’t just for grown-ups. Children can be very powerful advocates, too, both effecting change and educating. I joke that Q is “loud and proud” about her medical condition. She never passes up an opportunity to tell people about her diabetes. I often recall the time when she was about four and we were in the cafe at the library. She finished eating the snack we had brought and went over to talk with an elderly couple at another table. When her brother finished his snack, and we were ready to return to the children’s section, I went over to the three-some. The octogenarian told me that he and Q were “talking diabetes,” as he was type 2. He and Q had been conversing about checking blood sugar!

During a recent trip to the endocrinologist, she taught not one, but two people with diabetes about the insulin pump. The first was a child of about ten who takes five injections a day. Q showed her our supply bag and her insulin pump, and then tested her blood sugar. We demonstrated how easy it was to give Q insulin for her clementine snack with the pump. The girl and her mother were amazed. When we stopped to dine on our return trip home, we learned that our waitress was recently diagnosed with LADA (latent autoimmune diabetes in adults), and had been having wild blood sugar swings. Q once again demonstrated her insulin pump, and the young woman said she was going to talk with her endocrinologist about her options.

Children naturally become advocates because they don’t sugarcoat it. They tell it like it is, and are willing to share what they know and feel with others. If your child is ready to get involved, he or she can start as simply as a show-and-tell at school, reading a book about diabetes to classmates and showing the children some of the supplies needed for daily diabetes care. For children who really want to take advocacy to the next step, JDRF facilitates a Children’s Congress on Capitol Hill every other year where children meet with members of Congress to tell them about life with diabetes and urge the continued funding of diabetes research.

Kids First Diabetes Second Book

Learn More

If you’d like to learn more about the book, you can read more on the Kids First, Diabetes Second book page. It’s available widely in print and as an eBook from book sellers such as Barnes & Noble, Amazon.com, and IndieBound. And if you do read it and find it to be a valuable resource, I would greatly appreciate if you could write a review on any of the online retail sites. Thanks!

Disclosure: This post contains affiliate links to booksellers.

Please remember that I never give medical advice. Ask your endocrinologist or pediatrician for advice about your own child. Make your own informed decisions for your own child.

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More posts about JDRF’s Children’s Congress

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April 20, 2015 by Leighann

{JDRF Children’s Congress 2015} Introduction Video

JDRF Children's Congress 2015

Q was selected by JDRF to participate in the 2015 Children’s Congress this summer in Washington, DC.

This was her second time applying and she’s thrilled that she gets to represent other children living with type 1 diabetes.

Our family has many tasks to complete between now and July when we will meet with our Congressmen and women to urge renewal of the Special Diabetes Program (SDP). Our first task was completing a video in which Q introduces herself and answers one of several suggested questions.

Here is Q’s video where she talks about how diabetes affects the extracurricular activities she does:

(E-mail and feed subscribers click over for embedded video.)