Breakthrough T1D 2023 Children’s Congress is over—and it was an incredible success! It’s been a long four years since the last Breakthrough T1D Children’s Congress, and the Delegates did an incredible job of making up for lost time. Delegates forged new connections, told hundreds of stories, and, as a result, we made real progress towards achieving key aspects of our Advocacy agenda.
One Breakthrough T1D Children’s Congress, One Voice
Every two years, more than 160 children with type 1 diabetes (T1D) between the ages of 4 – 17 gather in Washington, D.C., to meet face-to-face with some of the top decision-makers in the U.S. Government. The selected Delegates represented nearly every state, as well as four International Affiliates. Delegates have a unique and empowering opportunity to help Members of Congress understand what life with type 1 diabetes is like, while forming lasting bonds with fellow youth who live with this autoimmune disease.
The event was led by Breakthrough T1D 2023 Children’s Congress Chair Natalie Stanback and her family.
The Delegates focused on two areas of BreakthroughT1D’s Advocacy Agenda: Renewing the Special Diabetes Program (SDP) and the insulin affordability crisis.
The SDP currently provides $150 million annually to T1D research through the National Institutes of Health (NIH), the country’s premier medical research agency. Additionally, it complements Breakthrough T1D’s research efforts, allowing Breakthrough T1D and the NIH to collaborate to advance T1D research as quickly as possible. The SDP is set to expire in September and renewing it is Breakthrough T1D’s biggest priority—and the #1 job for the Delegates.
Right now, there is legislation to renew the SDP for two years at $170 million annually. This would be the first annual increase in funding in 20 years.
“The SDP is vital,” said Natalie Stanback. “By spreading awareness in the halls of Congress and meeting with our lawmakers, we did all we could to ensure the research made possible by this program continues. We made sure the needs of the T1D community were heard!”
Congress also must build on recent progress made, and further address the high cost of insulin in America. More must be done to ensure all those who need it have access to affordable insulin.
Over the course of three days, Delegates traveled to Washington D.C., spent time with each other, and received training on how to advocate for these issues with their Members of Congress.
Celebrity T1D Role Models Join the Fight in Washington
Ten T1D champions also supported the event, inspiring the Delegates and joining our fight for the T1D community. These celebrity Role Models, who all either have T1D or a direction connection to it, included:
- Breakthrough T1D 2019 Children’s Congress Delegate, Athlete, and American Ninja Warrior Women’s Champion – Katie Bone
- NFL Super Bowl Champion – Orlando Brown, Jr.
- Broadcast Journalist – Madison Carter
- Rendering & Dailies Supervisor, Pixar Animation Studios “Turning Red” – Susan Fong
- Saxophonist & Music Arranger – Antoine Gibson
- Producer, Songwriter, Rock & Roll Hall of Famer – Jimmy Jam
- Breakthrough T1D Chief Executive Officer – Aaron J Kowalski, Ph.D.
- International Supermodel – Stephanie “Bambi” Northwood-Blyth
- Senior NFL Insider at ESPN, Sports Broadcast Journalist – Adam Schefter
- Actor & Producer – Derek Theler
In addition to lending their voices to the cause on Capitol Hill, the T1D Role Models participated in a town hall. At this event, the Delegates had the opportunity to ask questions and interact with the T1D Role Models. The questions varied, from “How does T1D impact working on a movie set?” to “What is it like to win American Ninja Warrior with T1D?” The T1D Role Models answered every question with honesty and specificity—showing that anything is possible for people affected by this disease.
Delegates Take on Capitol Hill
On July 11th, the Delegates officially headed to Capitol Hill.
The first event was a Senate Appropriations Committee hearing led by U.S. Senators Patty Murray (D-WA) and Susan Collins (R-ME), Chair and Vice Chair of the Senate Appropriations Committee, as well as Senator Jeanne Shaheen (D-NH), a senior member of the Appropriations Committee, the hearing was titled “Accelerating Breakthroughs: How the Special Diabetes Program Is Creating Hope for those Living with Type 1 Diabetes.”
Five witnesses spoke about the importance of these issues and what it’s like to live with T1D.
During the hearing, these witnesses testified before a standing room-only chamber full of our Delegates and their families. Delegates Elise Cataldo (NH) and Maria Muayad (ME) testified bout what it’s like to live with T1D, including the literal highs and lows, and the importance of the SDP and insulin affordability. Griffin Rodgers, MD, Director, National Institute of Diabetes and Digestive and Kidney Diseases, provided his perspective on the SDP, what it has accomplished, and what it can do with more, sustained funding. James “Jimmy Jam” Harris, award-winning Music Producer and Philanthropist, told his story of life as a T1D dad and his dreams for a world without T1D. Breakthrough T1D CEO Aaron Kowalski, Ph.D. also testified, sharing his unique perspective as a scientist and person with T1D.
Attendance was fantastic; 15 Senators came to the hearing and asked questions. This hearing was a unique and positive one—featuring a lot of applause and consensus amongst all the Senators.
“I got a sense that there was true bipartisanship in that room,” said Jimmy Jam after the hearing.
At the conclusion of the hearing, the Delegates traveled across Capitol Hill to meet with their Senators and Representatives to reiterate our calls to action: renew the SDP and enact legislation to make insulin more affordable.
Additionally, several Delegates who participated in T1D clinical trials traveled to the Food and Drug Administration (FDA) to meet with FDA Commissioner Robert M. Califf, M.D., and FDA staff to share their experiences in clinical trials and discuss the importance of developing and approving new therapies for the T1D community.
It’s A Wrap
In total, 163 Delegates, plus our T1D Role Models, conducted 239 meetings with U.S. Senators and Representatives to gain support for these critical issues. They did an incredible job—and were ideal representatives of the T1D Community. These Delegates were tasked with telling their stories about life with T1D, and each of them rose to the occasion—and more.
Get Engaged!
You can experience the highlights of Breakthrough T1D 2023 Children’s Congress on our social media channels, including interviews with Delegates and celebrities, recaps from Breakthrough T1D CEO Aaron Kowalski, and more. Check them out on Instagram, X, Facebook, YouTube and LinkedIn.
You can also experience navigating Capitol Hill virtually in Breakthrough T1D One World! The game, created by Breakthrough T1D as part of the Breakthrough T1D Game2Give program, is a virtual world built inside the popular online game Roblox that allows for education, celebration, and of course—play! It’s a place where people in the Breakthrough T1D community—kids, teens, and adults—can get together, play games, learn about T1D, and meet new friends. In the most recent update, players can take on the role of a Breakthrough T1D 2023 Children’s Congress Delegate and visit Capitol Hill, run obstacle courses, and so much more. Learn more and play at https://www.roblox.com/games/5823990610/Breakthrough-T1D-World
Join Us!
While the Delegates did an amazing job advocating to our legislators to renew the SDP and do more to fix the insulin affordability crisis, you can join the fight too. Sign up to be an advocate! It’s the easiest way to stay up-to-date and take action on advocacy issues.
This event was made possible by:
Delegate Social Sponsors Dexcom, Vertex, and Xeris Pharmaceuticals
Supporting Sponsors Insulet and Lilly
Diamond One Society Partnership Sponsors Ford and Marshalls
Cynthia Rice, Breakthrough T1D’s Chief Mission Strategy Officer, will leave behind quite a legacy once she steps down from her role at Breakthrough T1D at the end of March 2023.
“In her time with Breakthrough T1D, she has led with strategic purpose and passion,” read Breakthrough T1D CEO Aaron Kowalski’s December 2022 memo announcing Cynthia’s decision to leave. “She has been an incredibly valuable partner to me, as well as staff and volunteers throughout the organization.”
During her tenure at Breakthrough T1D, she has helped bring the artificial pancreas project to life, has driven efforts to renew the Special Diabetes Program, and was a key player in Breakthrough T1D’s response to and handling of COVID-19—all with the partnership of our strategic staff and vast network of volunteers, who are the bedrock of our advocacy efforts.
“It’s possible—while challenging—to impact the research and development (R&D) ecosystem to improve options and outcomes for people living with chronic diseases like type 1 diabetes,” says Cynthia. “Defining goals, tapping into strengths, building capacities, and remaining determined in the face of obstacles are critical.”
And for nearly two decades, she has done just that at Breakthrough T1D.
“Leverage—enlisting others to our cause—is critical to our success and core to our organizational DNA, whether it’s engaging friends and families, company R&D heads, government officials, or foundation leaders,” Cynthia says.
The Artificial Pancreas Endeavor
From Left: Breakthrough T1D International Board of Directors member Claudia Graham, Ph.D., M.P.H.; Breakthrough T1D Chief Mission Strategy Officer Cynthia Rice; and Senator Susan Collins (R-ME). Left-click on image to slightly enlarge.
Cynthia came to Breakthrough T1D in September 2005. Real-time continuous glucose monitors (CGMs) were in the early stages of development, with one approved just months prior.
Aaron Kowalski, Ph.D., who had come to Breakthrough T1D a year before and is now the CEO, and Jeffrey Brewer, a member of Breakthrough T1D’s International Board of Directors at the time, had just spent six months interviewing academic scientists, corporate executives, and other like-minded players to figure out whether Breakthrough T1D wanted to take on the development of an artificial pancreas. There were many barriers, and companies were very wary of getting involved.
In the interviews, it became clear that despite the hesitation among companies, there was significant potential benefit for the T1D community in pursuing artificial pancreas technologies. The leadership—needed to foster a therapy roadmap, research funding, regulatory pathway, and health care access—just wasn’t there.
Breakthrough T1D changed that. We made it a priority, bringing not only our research funding, but also our powerful advocacy forces, to speed the development of these devices.
“The goal of multiple artificial pancreas systems, with ongoing innovation, drove our strategy,” says Cynthia, “and we took actions early on with that goal in mind, utilizing our strengths, building new capacities and relationships, and battling doggedly to overcome obstacles.”
Overcoming the Obstacles
Among the first obstacles was that the benefits of continuous glucose monitoring in the management of T1D had only been shown in small studies. In 2008, a Breakthrough T1D multi-site randomized control clinical trial showed that people with T1D who used the devices experienced significant improvement in blood-sugar control. This was instrumental to CGM coverage and laying the groundwork for the artificial pancreas system to come to fruition and be covered by the healthcare system.
Another obstacle was linking together the two main components of a closed-loop artificial pancreas system—the glucose sensor and an insulin pump. Breakthrough T1D established the Artificial Pancreas Consortium, which connected researchers from several different laboratories to develop the computer algorithms so that the machines could “talk” to each other and then be commercialized, as necessary.
A third obstacle—perhaps the most challenging of them all—required engaging government, regulatory, and health care groups.
Breakthrough T1D worked with researchers, insurance companies, the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), Medicare, and Congress on regulatory and coverage issues. When the first artificial pancreas system came on the market in 2016, the T1D community was more than ready for the life-changing T1D management it offered.
“Seeing the artificial pancreas go from concept to reality, which is helping so many people keep their blood-sugar management in control, is what makes Breakthrough T1D and all of the advocacy volunteers—who sent an email, made a call, signed an action alert, or met with their Member of Congress—very proud of this historic achievement and the impact that these will have on the individual lives of those with type 1 diabetes,” Cynthia adds.
The Special Diabetes Program (SDP)
Cynthia Rice (far right, fifth row from the back), Breakthrough T1D volunteers, and Delegates at Children’s Congress 2013 with then-Vice President of the United States Joseph R. Biden (center). Left-click on image to slightly enlarge.
In 1997, with the bipartisan leadership of White House Chief of Staff Erskine Bowles and Speaker Newt Gingrich, Congress created the Special Diabetes Program (SDP), which annually allocates $150 million for T1D research at the NIH. Breakthrough T1D is the chief advocate of the SDP.
The SDP has been instrumental to some of the greatest advancements in the history of T1D—including research that led to artificial pancreas systems and the recent FDA approval of the first-ever drug that can delay onset of T1D, Tzield™ (teplizumab-mzwv).
Since its inception, the SDP has invested $3.4 billion into T1D research. The program’s success and continued renewal is the result in part of hundreds of Breakthrough T1D advocates meeting with their Members of Congress each year to discuss the importance of the SDP.
“Sustaining bipartisan support to renew again and again in challenging times in Washington is thanks to the amazing volunteer-staff partnership in advocacy,” says Cynthia. “This is now paying enormous dividends, not only in the artificial pancreas systems, but in cures therapies, including disease-modifying and cell therapy treatments.”
Breakthrough T1D’s Unique Strengths
“Breakthrough T1D has two strengths that are rare,” says Cynthia. “The first is scientific expertise, convening the best and brightest across fields and generating ideas to solve the biggest problems. The second is community passion, to influence R&D priorities, regulatory pathways, and health care access and enlist government leaders to take action for our cause.”
She adds: “Breakthrough T1D has harnessed these strengths and organized the community, leading to our higher-level power: Influence.”
“It’s not only possible but realizable for a small band of determined people, starting with our founding moms, to tackle and overcome big obstacles,” says Cynthia. “As long as we organize ourselves well, deploy smart strategies, and develop an advocacy message that people can get around, Breakthrough T1D will continue to have the impact that has historically been the pillar of our advocacy work.”
“More broadly, strong patient advocacy strengthens our health system and our society and helps align incentives in research, development, and health policy to benefit the people affected by the disease,” says Cynthia. “All of us as leaders should be thinking about what else we can do to help strong, independent patient communities come together and thrive as advocates, which I hope to do when I return to the health sector in 2024 after a sabbatical.”
A Legacy of Women Leaders
Breakthrough T1D was founded by women, has mostly women staff and volunteers, and counts numerous successful and influential women among its current and past leaders and supporters.
Women who, like Cynthia Rice, share Breakthrough T1D’s vision for a world without T1D and who will stop at nothing to turn that vision into reality.
“From the majority staff and volunteer base, to our women founders, to our international chair Mary Tyler Moore, to our advocates, fundraisers, and scientists,” says Cynthia, “Breakthrough T1D, as an organization, shows the power women can have to impact their world.”
Members of Breakthrough T1D’s Grassroots Leadership Team (GLT) along with members of Breakthrough T1D’s Advocacy Team, including Cynthia Rice (ninth person in from the right) at Breakthrough T1D Government Day 2023. Left-click on image to slightly enlarge.
Cynthia Rice at Government Day 2023. Left-click on image to slightly enlarge.
Our past Breakthrough T1D Children’s Congress Delegates are a dynamic group of kids and young adults that show how advocacy and the T1D community work together to inspire change.
They wanted to share some more advice with our newly selected Breakthrough T1D 2023 Children’s Congress Delegates!
Miles
Dallas, NC
Student at the Gifted and Talented Academy at Pleasant Ridge Elementary
Favorite memory from Breakthrough T1D Children’s Congress: I liked meeting my Representative in his fancy office in the Capitol Building.
Words of advice to 2023 Delegates: Bring snacks and something to do while you’re waiting in between meetings.
Kabir
Charlotte, NC
Student at the University of North Carolina Chapel Hill
Favorite memory from Breakthrough T1D Children’s Congress: I loved meeting tons of new people while being able to make progress towards a goal that’s near and dear to my heart.
Words of advice to 2023 Delegates: Remember any contribution you make, no matter how small it may seem, can have a cascading effect.
Carly
Redford, MI
Student at Albion College
Favorite memory from Breakthrough T1D Children’s Congress: When I met many other incredible Delegates and celebrities and the Senate hearing because it was so inspiring to hear the testimonies.
Words of advice to 2023 Delegates: Be prepared to tell the story of how you became the incredible, fierce, and strong advocate you are today! And start a group chat if you meet some new friends because some of the people I have met have become my friends for life.
Lauren
Wilmette, IL
Student at North Shore Country Day School
Favorite memory from Breakthrough T1D Children’s Congress: I loved going to the Senate hearing.
Words of advice to 2023 Delegates: Have fun! It’s a great adventure.
Ellie
Highlands Ranch, CO
Student at Colorado Early Colleges
Favorite memory from Breakthrough T1D Children’s Congress: Meetings we had with the Senators. The conversations I had helped me to develop and understand my own skills in speaking, and in making my own opinions heard.
Words of advice to 2023 Delegates: Look past whatever is happening in politics, and really focus on your goal of sharing your story.
Hattie
Clive, IA
Student at Waukee Middle School
Favorite memory from Breakthrough T1D Children’s Congress: Meeting all of the other kids that are just like me! It was nice to not be the only kid beeping at events.
Words of advice to 2023 Delegates: The members of Congress you meet with are people just like us—the more they know about T1D the better they can help us!
Chloe
Warwick, RI
Student at Toll Gate High School
Favorite memory from Breakthrough T1D Children’s Congress: Going to the Senate and state Representatives with friends from my state.
Words of advice to 2023 Delegates: Don’t be afraid to talk to anyone. Everyone there is so nice, and this is the perfect place to not only advocate for T1D but also, to make new lifelong friends.
Casey
Laramie, WY
Student at the University of Wyoming
Favorite memory from Breakthrough T1D Children’s Congress: My senator was speaking on the Senate floor and came back to his office specifically for our meeting, before heading back down to join the session again. It made me feel heard and important!
Words of advice to 2023 Delegates: I would recommend bringing a good pair of shoes for walking and taking advantage of great opportunities to tour all the important landmarks and buildings in DC!
Ethan
Beverly Hills, MI
Student at Wylie E. Groves High School
Favorite memory from Breakthrough T1D Children’s Congress: My favorite memory was meeting kids from all over the world who also had type 1 diabetes.
Words of advice to 2023 Delegates: Don’t be nervous, be yourself, tell your story and know you are making a difference.
Adriana
Milton, PA
Student at Western Governors University
Favorite memory from Breakthrough T1D Children’s Congress: Getting to be in a hotel full of people with T1D. It was so cool to connect with everyone immediately because we all experience the same thing.
Words of advice to 2023 Delegates: Take every moment in! The experience goes by so fast and when you leave, you will wish you were back there.
Sophie
Chappaqua, NY
Student at Horace Greeley High School
Favorite memory from Breakthrough T1D Children’s Congress: The first time I walked into the main area, there were 165 Delegates with type 1 diabetes all in one room. It made me realize I wasn’t alone living with T1D and that there were so many other people like me who knew what I was going through.
Words of advice to 2023 Delegates: Take photos of everything big and small! It’s truly a once-in-a-lifetime experience.
Richard
Jacksonville, FL
Student at Bartram Elementary School
Favorite memory from Breakthrough T1D Children’s Congress: I enjoyed meeting with members of Congress to share my experiences and challenges having T1D at 4 years old.
Words of advice to 2023 Delegates: If you’ve ever felt like the only one with T1D or that nobody understands, this trip will connect you with people who truly understand.
Cameron
Ridgeville, SC
Student at Western Carolina University
Favorite memory from Breakthrough T1D Children’s Congress: Doing all the social media challenges and the scrapbook we shared with our representatives.
Words of advice to 2023 Delegates: Have really comfortable shoes! You don’t need to be nervous you just need to be you. You are so powerful and unstoppable.
Annelies
Eagle River, AK
Student at University of Alaska Anchorage
Favorite memory from Breakthrough T1D Children’s Congress: Being in a room full of not only kids with T1D but parents, staff, and others who completely understood what it was like was something I’ll never forget.
Words of advice to 2023 Delegates: Speak from the heart, and those around you will respond and want to listen when you come from a genuine place.
Breakthrough T1D 2023 Children’s Congress takes place July 9-11, in Washington, D.C.
Natalie Stanback isn’t new to fighting for the type 1 diabetes community. In 2019, she came to Washington DC with her daughter, Nadia to bring awareness to the importance of federal funding for T1D research. Last year, she briefed Congress on the real-world impact of the insulin affordability crisis.
That’s why she’s the perfect person to serve as Chair at the Breakthrough T1D 2023 Children’s Congress. She knows T1D; she knows Advocacy—and she knows how to get things done on Capitol Hill!
Along with her daughter, Nadia, who was a Breakthrough T1D 2019 Children’s Congress Delegate, and her husband, Isaiah, a former NFL wide receiver, Natalie will lead 165 Delegates from all 50 states, along with 5 countries, to tell Congress what it’s like to live with T1D, and what they need to do to help.
“I am so excited to be Chair of Breakthrough T1D 2023 Children’s Congress!” Natalie said. “Last time, we were awestruck by the event. We can’t wait to come back to Washington and continue this important work with all the Delegates.”
When Nadia was diagnosed with T1D at the age of 3, the diagnosis did not come out of the blue. Natalie’s brother, Michael, had been diagnosed 24 years prior. “Given my prior knowledge and experience, Nadia’s diagnosis was breathtaking but not as traumatic as it could have been,” Natalie said. Thankfully, Nadia is doing great. She’s active in sports and she is very involved in the daily management of her T1D.
Natalie still raves about Breakthrough T1D 2019 Children’s Congress. Seeing the impact and feeling the power firsthand is the main reason they are coming back to chair the event.
“It was the best whirlwind that we’ll forever remember,” Natalie said. “We loved the panels, the information and the ability to DO something,” she continued. “It was such a tangible validation and inspiration. I hope that such is the experience and take-away for all of the families and Delegates.”
Breakthrough T1D Children’s Congress is one of the most important things Breakthrough T1D does. Founded in 1999, this event is one of the key drivers that advances Breakthrough T1D’s Advocacy agenda. This event typically happens every other year, but it was canceled in 2021 due to COVID-19. Natalie and the Delegates are ready to make up for lost time!
This year, the focus will be on the Special Diabetes Program (SDP). This program currently provides $150 million annually to T1D research through the National Institutes of Health, the country’s premier medical research agency. The SDP also complements Breakthrough T1D’s research efforts, allowing Breakthrough T1D and the NIH to collaborate to advance T1D research as quickly as possible. This program is set to expire in September and renewing it is Breakthrough T1D’s biggest priority—and the #1 job for the Delegates.
“The SDP is vital,” said Natalie. “By spreading awareness in the halls of Congress and meeting with our lawmakers, we can ensure the research made possible by this program continues. We will make sure the needs of the T1D community are heard loud and clear!”
The Delegates will also speak to the rest of Breakthrough T1D’s advocacy agenda, which includes our efforts around insulin affordability.
“I am looking forward to encouraging other parents to hold on to hope, to count their blessings and to seek the silver linings in this journey,” Natalie said. “That their voices and efforts are meaningful and greatly impact Breakthrough T1D’s progress and footprint. It will take all of us. We must keep going.”
Explore the Breakthrough T1D 2023 Children’s Congress website to learn more about the event, the issues, meet the Delegates from each state, and more!
Watch a 2021 video from ABC’s Good Morning America about the Stanback Family.
Our past Breakthrough T1D Children’s Congress Delegates are a dynamic group of kids and young adults that show how advocacy and the type 1 diabetes (T1D) community work together to inspire change.
They wanted to share some advice with our newly selected Breakthrough T1D Children’s Congress Delegates!
Carson
La Porte, TX
Student at the Baker 6th Grade Campus
Favorite memory from Breakthrough T1D Children’s Congress: I loved everything about Children’s Congress, from sightseeing with fellow Delegates, to meeting T1D role models like Ryan Reed and Victor Garber, and especially talking to my congressman and senators.
Words of advice to 2023 Delegates: Do all the things! Don’t be nervous to introduce yourself and connect with others.
Arianna
Randolph, NJ
Student at Stevens Institute of Technology
Favorite memory from Breakthrough T1D Children’s Congress: This was the first time I was surrounded by so many others with T1D, and it was funny hearing all the pumps and sensors beeping. It was really interesting to hear their stories and exchange tips and tricks on diabetes management.
Words of advice to 2023 Delegates: Enjoy the experience. By just being there and spreading the message about the need for funding, you are making a huge difference.
Sophie
Spokane, WA
Student at the University of Portland
Favorite memory from Breakthrough T1D Children’s Congress: Getting to connect with the other Delegates from my state. In fact, I am still in contact with some of them!
Words of advice to 2023 Delegates: Know that you were selected to be a Delegate for a reason! Have confidence in yourself and don’t be afraid to put yourself out there.
Theo
North Liberty, IA
Student in the Iowa City Community School District
Favorite memory from Breakthrough T1D Children’s Congress: Meeting other kids with diabetes and running around the hotel and playing with new friends.
Words of advice to 2023 Delegates: Travel to DC one day prior to the beginning of Children’s Congress activities and consider meeting up with your fellow state Delegates before your trip to get to know each other.
Grace
El Dorado Hills, CA
Student at California Polytechnic State University, San Luis Obispo
Favorite memory from Breakthrough T1D Children’s Congress: I felt so supported and comforted to meet other people with T1D. The experience taught me that I have the power for change and gave me confidence.
Words of advice to 2023 Delegates: When talking to your representatives, don’t be nervous! Try to have personal stories to get them engaged and be yourself!
Catherine
Wilmington, NC
Student at New Hanover High School
Favorite memory from Breakthrough T1D Children’s Congress: Being able to connect with and hear from so many people with T1D and being able to relate to their stories. Also, getting to meet the T1D celebrities!
Words of advice to 2023 Delegates: Do not be afraid to speak out and tell your story of living with T1D. Everyone will be encouraged the more they share and hear from others as they navigate living with T1D.
Saige
Haddam, CT
Student at Haddam Killingworth High School
Favorite memory from Breakthrough T1D Children’s Congress: I loved the opportunity to meet with my elected officials and make a difference for me and my friends living with T1D.
Words of advice to 2023 Delegates: Take advantage of every moment to bond with other Delegates. This is a unique time to be surrounded by others that are just like you.
Julian
Lexington, SC
Student at Midlands Technical College
Favorite memory from Breakthrough T1D Children’s Congress: I enjoyed the research and meeting the late John Lewis. I loved being an advocate for my health.
Words of advice to 2023 Delegates: Make sure you do interviews in your local community. Doing that helped my nervousness.
Anya
Bend, OR
Student at Oregon State University Cascades
Favorite memory from Breakthrough T1D Children’s Congress: The feeling of solidarity with other families. To be in a room where everyone “gets it” was very emotional and powerful
Words of advice to 2023 Delegates: It’s humid! Understand what it means to dress for humidity. Also, if you are able, stay a few extra days to see the sights!
Hannah
Lake Wylie, SC
Student at Clemson University
Favorite memory from Breakthrough T1D Children’s Congress: I made so many connections with people that I’m still friends with! It was also amazing to have the chance to share my T1D story in front of so many people that have the power to make a difference in my life!
Words of advice to 2023 Delegates: Have so much fun with every TV interview, speaking opportunity, and friendship you will make in DC!
Claire
Moscow, ID
Student at the University of Idaho
Favorite memory from Breakthrough T1D Children’s Congress: Meeting people with type 1 diabetes that were involved in so many different things. Speaking to them inspired me to never let diabetes get in my way.
Words of advice to 2023 Delegates: Share your story about what it’s like to have type 1 diabetes. You live it every day—it is YOUR story to share, and you have a right to it.
Samantha
St. Petersburg, FL
Student at Boca Ciega High School
Favorite memory from Breakthrough T1D Children’s Congress: Having the opportunity to speak with and shake hands with the men and women who made pivotal decisions about our funding and ran our nation because it made me feel like I was making a true difference in the lives of millions of people.
Words of advice to 2023 Delegates: Remember your voice is so important to all of us. Together we are unstoppable!
Nadia
Lewisville, TX
Student at Coppell Classical Academy
Favorite memory from Breakthrough T1D Children’s Congress: Meeting so many other kids with T1D from around the country and getting to go to Capitol Hill to talk to the senators.
Words of advice to 2023 Delegates: Make sure you get enough rest every night that you’re there. Bring good shoes for walking and something to write down gamer tags and contact information for all the new friends you will make.
Rachel
Flagstaff, AZ
Student at Northern Arizona University
Favorite memory from Breakthrough T1D Children’s Congress: Meeting other people with T1D made me feel so welcomed.
Words of advice to 2023 Delegates: Take advantage of everything that the program offers. The Congress members want to hear your personal experiences so don’t feel nervous—there will be plenty to talk about.
Breakthrough T1D 2023 Children’s Congress takes place July 9-11, in Washington, D.C.
Arianna Gehan speaking at the Breakthrough T1D 2019 Children’s Congress
Arianna Gehan didn’t want to think about type 1 diabetes (T1D) any more than she had to after her diagnosis at age 11.
“It took about a year before my mom convinced me just to attend a Breakthrough T1D One Walk,” she said.
That event introduced her to Breakthrough T1D, and she immediately felt a connection with others who were facing similar challenges. It inspired her to get more involved, including a role as a Youth Advocacy Leader.
“Volunteering with Breakthrough T1D makes me more comfortable with living with the disease while also giving me the confidence to fight for what I believe in,” she said.
A Sense of Belonging
Arianna was a Delegate for the Breakthrough T1D 2019 Children’s Congress. At first, she was nervous about meeting with Congressional Representatives, but Breakthrough T1D’s support network gave her the confidence to speak passionately about living with T1D. That confidence has stuck with her to this day.
“It’s hard to underscore how incredible it was to meet with the Representatives and their teams,” Arianna recalled. “To have the Congressional offices really listen and take an interest in our stories was an impactful and validating experience.”
Being surrounded by hundreds of other kids with T1D reinforced the sense of belonging she experienced at One Walk. It also put into perspective just how many people are working together to improve the lives of people with T1D, from Breakthrough T1D to politicians to celebrities.
“Whenever I get frustrated about living with this disease, it comforts me to know I am not alone in the fight and that if we keep working together, we will continue to bring on beneficial change,” she said.
An Opportunity to Educate
Since 1999, the Breakthrough T1D Children’s Congress has invited youth with T1D to Washington, D.C., to meet with Members of Congress and other policymakers to educate them about what it’s like to live with T1D and to explain why Federal support for research and affordable access to a range of T1D management tools are so critical.
“Children’s Congress gives a face to T1D,” said Elena Purdy, Senior Manager of Breakthrough T1D Grassroots Advocacy. “It helps our national decision-makers better understand the disease’s financial, medical, and emotional costs, and what they can do about it.”
Breakthrough T1D 2023 Children’s Congress Delegates will focus on several advocacy initiatives:
- Creating significant support within Congress for a renewal of the Special Diabetes Program (SDP), which currently provides $150 million/year for T1D research through the National Institutes of Health (NIH).
- Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices.
- Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
- Accelerating progress towards more affordable insulin.
Being a Breakthrough T1D 2019 Children’s Congress Delegate was life-changing for Arianna. “I guarantee that the experience and the people you meet make it all worth it, and I would truly encourage everyone to apply,” she said.
A Bright Future in the Health Sciences
Today, Arianna studies biomedical engineering at Stevens Institute of Technology in Hoboken, NJ. “I knew from a young age I wanted to be an engineer because I liked math and science,” she said. “Getting diagnosed with T1D helped me find my passion for health care.”
She’s exploring both research and industry career paths in her field. Arianna is also very interested in technology—she’s currently coding an app to connect blood sugar data with sleep data to improve nighttime notifications. She hopes to create a company around it!
A T1D-focused career never would have crossed Arianna’s mind if it weren’t for the Breakthrough T1D 2019 Children’s Congress. “Being surrounded by so many people who were passionate about improving lives really inspired me to pursue a field in health care and, more specifically, type 1 diabetes,” she said.
Breakthrough T1D 2023 Children’s Congress Delegates will be announced in March 2023.
Will DeMeritt has a cat named Squirrel.
That sense of humor is one of his many endearing qualities.
“Will is smart, funny, and caring,” said his mom, Jen. “He’s super independent, a confident leader, and enjoys helping others.”
Now 13-years old, Will was diagnosed with type 1 diabetes (T1D) seven years ago. It was a diagnosis compounded with another health challenge: Will was born deaf.
Overcoming Unique Challenges
Being a deaf child with T1D means more hurdles to overcome, both for Will and his parents, Jen and Derrick.
“Learning about himself and his diagnosis was a process,” Jen said. “It has been difficult to find caregivers—from teachers to doctors to camp counselors—that can not only communicate with him in his primary language of American Sign Language (ASL), but also understand the medical care he needs.”
Navigating a social life has also been tricky for Will. Despite having many friends, his T1D friends aren’t deaf, and none of his deaf friends have T1D. He often needs to explain how he is feeling more than most teenagers.
“His peer group is made up of friends without T1D that do try to understand,” Jen said. “And recently he has been able to stay connected with peers from diabetes camp through technology.”
Amplified Advocacy
Jen and Derrick were accustomed to advocating for Will as a deaf child—adding T1D to the mix was overwhelming. But Breakthrough T1D stepped in to support them. “Breakthrough T1D let us know there is an army of T1D warriors walking this journey with us and pushing for a cure,” Jen said.
When the DeMeritts saw an announcement from Breakthrough T1D about the 2019 Children’s Congress, they saw it as an opportunity for Will to meet other kids with T1D, learn more about the disease, and help inspire others. They were thrilled when Will was selected to be a Delegate.
“The interactions with the elected officials and the Breakthrough T1D Congress Delegates were amazing to watch,” Jen said. “Through Will’s ASL interpreters he told them his story and they gave him 100% of their attention.”
For Will, his favorite part was talking to people with T1D, just like him.
“I loved meeting all the celebrities with T1D,” he said. “And when I met Representative Elissa Slotkin, I asked her to support us in finding a cure!”
Building Excitement
Breakthrough T1D 2023 Children’s Congress will take place July 9-11, 2023—the first time it is being held since 2019 due to the pandemic. The excitement is building in Breakthrough T1D Advocacy, with an event schedule already packed with educational sessions, social events, and a Senate hearing.
“Children’s Congress is truly a once-in-a-lifetime opportunity for kids with T1D,” Purdy said. “Seeing the Delegates feel a sense of empowerment and learn to use their voices is just incredible.”
Breakthrough T1D 2023 Children’s Congress Delegates will focus on several advocacy initiatives:
- Creating significant support within Congress for a renewal of the Special Diabetes Program (SDP), which currently provides $150 million/year for T1D research through the National Institutes of Health (NIH).
- Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices.
- Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
- Accelerating progress towards more affordable insulin.
A Dreaded Diagnosis
In 2020, at the height of the COVID-19 pandemic, Will’s twin sister, Mikaila, started feeling unwell. They scheduled a doctor appointment, but after she complained of thirst and dizziness, Derrick decided to check her blood sugar with Will’s glucose monitor. It was over 600. After a conversation with Will’s endocrinologist, they started her on insulin that night.
“That was the harder diagnosis,” Jen said. “She knew what T1D was and every year at her annual physical would always get so scared when they checked for sugar in her urine.”
The DeMeritts tackled the all-too-familiar challenge the only way they knew how: with resilience and with love.
“There was a lot of fear, anger, and frustration,” Jen said. “But Will helped Mikaila feel better. He shared tricks he had learned and even practiced giving saline shots to an orange with her!”
A New Outlook
Breakthrough T1D Children’s Congress helped Will develop a new, more positive outlook. “When I was first diagnosed with T1D, I totally hated it,” he said. “I am finally alright about it.”
His parents agree.
“Being an Advocate helped Will realize he wasn’t alone,” Jen said. “He became more confident in talking about his feelings about T1D and the effect it has on him.”
It’s that sense of empowerment and community that draws thousands of applicants to Children’s Congress every year. Will can see why.
“It helped me find my voice,” Will said. “Breakthrough T1D Children’s Congress changed my life.”
Breakthrough T1D 2023 Children’s Congress Delegates will be announced in March 2023.
Pictured: Katie Bone competing on Season 14 of American Ninja Warrior
The terms “type 1 diabetes” and “ninja warrior” aren’t usually connected.
That is, unless you’re Katie Bone, a 16-year-old with type 1 diabetes (T1D) from New Mexico who appeared on the latest season of the hit show American Ninja Warrior.
Katie is a high-level athlete who has been a part of the Breakthrough T1D family since her T1D diagnosis at age 11. “Almost immediately after I was diagnosed, my family and I volunteered at the Breakthrough T1D Gala,” Katie recalled. “That encouraged me and made me want to get more involved.”
Since then, Katie and her family have volunteered regularly at Galas and One Walks, doing everything from starring in videos to loading trucks for events.
“Through it all, from the Bag of Hope to the events, Breakthrough T1D was the message of hope and the greater connector within my community,” Katie said.
But it was her participation in Advocacy meetings that made her want to spread Breakthrough T1D’s message of hope on a larger scale.
Making Special Connections
Former U.S. Representative Deb Haaland with Katie Bone
Katie was a Breakthrough T1D 2019 Children’s Congress Delegate and met with her U.S. Senators and Representative to advocate on behalf of people in New Mexico living with T1D. She connected with other children living with T1D, professionals who achieved career success while managing T1D, and even celebrities who shared their T1D stories. The experience made her feel like she could achieve anything.
“All of the information gave me hope for my own future and to achieve my dreams while managing T1D,” Katie said.
Her time with former U.S. Rep. Deb Haaland (now U.S. Secretary of the Interior) was particularly special. Rep. Haaland was so moved by Katie’s story and the scrapbook she shared about living with T1D, she gifted Katie a scarf from her personal collection to show her gratitude. “It was very moving,” said Tammy Bone, Katie’s mother.
Advocating for Awareness
Since 1999, the Breakthrough T1D Children’s Congress has invited youth with T1D to Washington, D.C., each year to meet with Members of Congress and other policy makers to educate them about what it’s like to live with T1D, and to explain why Federal support for research and affordable access to a range of T1D management tools are so critical.
“Children’s Congress gives a face to T1D,” said Elena Purdy, Senior Manager of Breakthrough T1D Grassroots Advocacy. “It helps our national decision makers better understand the financial, medical, and emotional costs of the disease, and what they can do to help.”
Breakthrough T1D 2023 Children’s Congress Delegates will focus on several advocacy initiatives:
- Creating significant support within Congress for a renewal of the Special Diabetes Program (SDP), which currently provides $150 million/year for T1D research through the National Institutes of Health (NIH).
- Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices.
- Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
- Accelerating progress towards more affordable insulin.
Climbing Walls…and Breaking Some Down
Katie’s accomplishments on American Ninja Warrior have been “amazing,” but being a high-performance athlete with T1D does require an extra level of preparation. “The potential for sometimes long hours, overnight filming schedules, and even having a quite low blood sugar at semi-finals when it was time to run were some of the unique challenges I had to overcome,” Katie said.
Katie’s fellow competitors have told her that since meeting her, they have looked up information on T1D and had no idea how hard it can be to manage, particularly for athletes. Katie knows her performance puts a spotlight on her T1D, and she’s totally okay with that. “To have a platform from which I can show other kids that it’s okay to wear their medical devices and it doesn’t make you weird or prevent you from achieving your goals is just incredible,” she said.
Just Do It
Katie encourages all kids with T1D to apply for Breakthrough T1D 2023 Children’s Congress. “Don’t be afraid of the what ifs,” she said. “What if it’s great? Just do it!”
She is looking forward to a future as a professional athlete and knows nothing will stop her. “Children’s Congress gave me a clear belief that I can truly achieve anything…regardless of T1D!”
Breakthrough T1D 2023 Children’s Congress Delegates will be announced in March 2023.
Jasmine Meriedy, a student at Southern University A&M College in Baton Rouge, LA
Ten years from now, Jasmine Meriedy sees herself working as an entertainment journalist, interviewing Zendaya or Chris Evans at a red-carpet event.
But today, Jasmine is a full-time college student at Southern University A&M College in Baton Rouge, LA, majoring in mass communications.
Diagnosed with type 1 diabetes (T1D) at age 1, Jasmine’s family got involved with Breakthrough T1D right away with a OneWalk Team, Jasmine’s Angels. “I don’t remember a time when the Breakthrough T1D family wasn’t there for my family and me,” she said.
“Breakthrough T1D helped us get connected to other families that understood the struggles of having a child with T1D,” said LaQuanta Bailey, Jasmine’s mom. “Our family then mentored other newly diagnosed families to ease their concerns with their new journey.”
A Passion for Advocacy
Jasmine has always had a strong passion for advocacy, particularly when it comes to those who struggle to afford T1D supplies. “No one should have to weigh the options of paying for medication or the cost of living in our country,” she said. She participated in Breakthrough T1D’s “Promise to Remember Me” campaign, where she visited her local congressman’s office to encourage support of Breakthrough T1D’s research initiatives.
Jasmine took the next big step in her advocacy work by participating in Breakthrough T1D 2019 Children’s Congress. The experience empowered her to speak out about her T1D. “Children’s Congress opened many doors for me to be able to share more about my experience and others living with type 1 diabetes,” she said. “Many people are shocked when I say that I went to Washington to speak about my condition, especially at a young age.”
While some of Jasmine’s favorite memories from Children’s Congress are making lifelong friends and game nights in the hotel, it also made her feel like part of a much larger community. “It helped me see that I’m not alone in the day-to-day routine of T1D and we are all fighting for a cure,” she said.
An Exciting Year Ahead
The next Breakthrough T1D Children’s Congress will take place July 9-11, 2023—the first time it is being held since 2019 due to the pandemic. The excitement is building in Breakthrough T1D Advocacy, with an event schedule already packed with educational sessions, social events, and a Senate hearing.
“Children’s Congress is truly a once-in-a-lifetime opportunity for kids with T1D,” said Elena Purdy, Senior Manager of Breakthrough T1D Grassroots Advocacy. “Seeing the delegates feel a sense of empowerment and learn to use their voices is just incredible.”
Breakthrough T1D 2023 Children’s Congress Delegates will focus on several advocacy initiatives:
- Creating significant support within Congress for a renewal of the Special Diabetes Program (SDP), which currently provides $150 million/year for T1D research through the National Institutes of Health (NIH).
- Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices.
- Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
- Accelerating progress towards more affordable insulin.
Paying it Forward
LaQuanta believes that Breakthrough T1D Children’s Congress helped build confidence in her daughter and hopes Jasmine will use that confidence to pay it forward. “I can see her mentoring other kids to show them that it’s okay to be different—it sets you apart in a special way,” she said.
Jasmine can’t stress enough how important of a role Breakthrough T1D Children’s Congress played in shaping who she is. “It changes your perspective on life, showing you that you’re not alone.”
Breakthrough T1D 2023 Children’s Congress® applications are open now through November 30 at cc.breakthrought1d.org.
Pictured above (L-R): Kabir Dewan, Breakthrough T1D CEO Aaron Kowalski, Ph.D., and Kabir’s father Kamal Dewan at the Breakthrough T1D 2019 Children’s Congress
Kabir Dewan is a second-year Morehead-Cain Scholar studying biomedical engineering, neuroscience, and chemistry on the pre-med track at the University of North Carolina Chapel Hill.
His journey with Breakthrough T1D began when he was diagnosed with type 1 diabetes (T1D) at age 13, after suffering a stroke due to high blood sugar. The initial shock was soon replaced by a surprising feeling of relief. “I realized that the diagnosis was a blessing in disguise because I finally figured out what was wrong with me and could live a healthier, more fulfilling life,” he said.
Breakthrough T1D reached out to his family with a Bag of Hope and “warm words from volunteers who offered support and advice,” Kabir remembered. The sense of community he felt with Breakthrough T1D led to avid volunteering, including roles as the North Carolina Director of Teen Outreach, and Vice President and President of the North Carolina Youth Advocacy Team.
An Empowering Experience
In 2019, Kabir was selected as a Breakthrough T1D Children’s Congress (CC) Delegate. In addition to meeting his U.S. Senators and Representative from North Carolina, as well as fellow Delegates and celebrities with T1D, Kabir delivered an impactful speech thanking the CC corporate sponsors.
“The receptiveness of legislators and aides on Capitol Hill was very inspiring,” he said. “They reassured me that they were willing to make legislative changes to fund research and get us closer to a cure.”
Elena Purdy, Senior Manager of Breakthrough T1D Grassroots Advocacy, said the empowerment Kabir felt is shared by many. “The Delegates leave the event knowing they can do anything they set their minds to,” she said. “It’s just amazing to witness year after year.”
Breakthrough T1D reached out to his family with a care kit and “warm words from volunteers who offered support and advice,” Kabir remembered. The sense of community he felt with Breakthrough T1D led to avid volunteering, including roles as the North Carolina Director of Teen Outreach, and Vice President and President of the North Carolina Youth Advocacy Team.
Giving a Face to T1D
Since 1999, the Breakthrough T1D Children’s Congress has invited youth with T1D to Washington, D.C., to meet with Members of Congress and other policy makers to educate them about what it’s like to live with T1D, and to explain why Federal support for research and affordable access to a range of T1D management tools are so critical.
“Children’s Congress gives a face to T1D,” said Purdy. “It helps our national decision makers better understand the financial, medical, and emotional costs of the disease, and what they can do to help.”
Breakthrough T1D 2023 Children’s Congress Delegates will focus on several advocacy initiatives:
- Creating significant support within Congress for a renewal of the Special Diabetes Program (SDP), which currently provides $150 million/year for T1D research through the National Institutes of Health (NIH).
- Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices.
- Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
- Accelerating progress towards more affordable insulin.
Kabir encourages anyone thinking about applying for Breakthrough T1D 2023 Children’s Congress to go for it. “It will be one of the most fulfilling and meaningful experiences you have,” he said.
Bridging T1D and Cultural Divides
The more Kabir got involved with Breakthrough T1D, the more he wanted to educate others about T1D. While at home during the COVID-19 pandemic, he wrote a memoir, L1V1NG: A teenager’s inspiring journey with type 1 diabetes. It was a way for him to share the lessons he learned.
“The book details my diagnosis and, more importantly, my recovery from it to inspire other people with T1D to not give up hope in the face of adversity, and to help them find their ‘new normal’,” he said.
Kabir was also a featured panelist for a Breakthrough T1D Facebook Live event, where he discussed living with T1D as a young adult member of the Asian American Pacific Islander (AAPI) community. By sharing his story, he hopes to bridge cultural divides within the management of T1D.
“From figuring out carb counts for traditional Indian foods through trial and error to adapting insulin doses around the aspects of my cultural identity that impact my lifestyle, I want to assure other AAPI-identifying people with T1D that there are others out there with similar backgrounds dealing with the same issues,” he said.
A Bright Future
Kabir’s advocacy work didn’t end with Breakthrough T1D 2019 Children’s Congress. This year, he joined Breakthrough T1D’s new Advocates in Action Council for young adults as a member of the leadership team.
As he thinks about his future, Kabir knows Breakthrough T1D will be part of it.
“I see myself wrapping up my medical residency and beginning my career as a doctor in a hospital setting while also, as a result of the Breakthrough T1D 2019 Children’s Congress, remaining a lifelong advocate for people living with T1D.”
Breakthrough T1D 2023 Children’s Congress® applications are open now through November 30 at cc.breakthrought1d.org.
