Breakthrough T1D Canada was proud to have representatives included in this important advocacy event.
The Breakthrough T1D Children’s Congress advocacy program organized by Breakthrough T1D International in the United States, was inspired by a boy from Massachusetts named Tommy Solo (one of the type 1 diabetes (T1D) role models at the event). At age nine, he asked his mother, “Why can’t kids go to Washington and tell their Representatives about what it is like to have type 1 diabetes and let them know that we want scientists to find a cure?” His mom and other volunteers agreed, and in 1999, the first-ever Children’s Congress took place in Washington, D.C.
Since then, 12 successful Children’s Congresses have been held, one every other year, and more than 1,000 kids with T1D have served as Delegates. Breakthrough T1D Children’s Congress has been essential to securing continued government funding of T1D research and to raise awareness of the daily burden of Americans living with this serious autoimmune disease.
The 2025 selected Delegates represented all 50 states and the District of Columbia, as well as Breakthrough T1D’s five International Affiliates (Australia, Canada, Israel, the Netherlands, and the United Kingdom).
Delegates form lifelong friendships, meet T1D role models, develop leadership skills, and leave Children’s Congress empowered to use their voices for the change that will improve their lives and the lives of all people affected by T1D.
This year, the Children’s Congress took place between July 7-9 and brought over 170 children between the ages of 4-17 to Washington DC to meet face-to-face with US lawmakers and advocate for change.
Advocacy priorities focused primarily on ensuring the renewal of the Special Diabetes Program, a critical program that provides dedicated funding for T1D research at the National Institutes of Health. First created in 1997, $3.5 billion has been provided to date and has yielded at least $50 billion in federal healthcare savings.
Breakthrough T1D Canada’s ambassador representative was Emily Gervais, a 12-year-old from Edmonton, Alberta. Since her diagnosis at age 8, Emily and her family have been active in raising funds for Breakthrough T1D Canada and T1D research, including events like basketball tournaments, raffles, sponsorship events, and fundraisers.
As an advocate, Emily also involved her whole school in raising awareness for T1D by hosting a cotton candy sale. She has also volunteered with her family at the 2024 Edmonton Breakthrough T1D Walk, along with fundraising, has spoken at the Edmonton Breakthrough T1D Ride and has participated in Kids for Cure in the Community, advocating to local leaders for increased T1D awareness and support.
Emily prepared for the Children’s Congress by creating a scrapbook to share her T1D journey including her diagnosis, the devices she uses and the people who support her, her hobbies, and what a cure would mean to her. This scrapbook was left at the Canadian Embassy for the Canadian Ambassador to review.
Once at the Children’s Congress, Emily held a meeting at the Canadian Embassy, participated in meetings at offices of US Senators and Representatives on Capitol Hill, was part of the T1D Role Model Town Hall: https://cc.breakthrought1d.org/t1d-role-models/, a US Senate Hearing: https://www.appropriations.senate.gov/hearings/a-future-without-type-1-diabetes-accelerating-breakthroughs-and-creating-hope and was the Canadian representative for the announcement of the first ever Barbie with type 1 diabetes.
Emily also made sure that Canadian-specific advocacy needs were included, when at the Canadian Embassy she shared how important it was to continue funding research for the approximately 300,000 Canadians living with T1D.
The role models she met with, the relationships she made, and the skills she developed at the Children’s Congress will all stay with her as she continues to advocate for the T1D community in the future.
In her own words: “Meeting new friends, being one of the first kids to get a T1D Barbie and going to the Senate hearing was something I will never forget. One of the best parts was when an alarm (her CGM notifying her of low blood glucose) beeped and it felt normal. No stares from other kids, just people checking if it was them! I really hope the SDP (special diabetes program) is renewed so we can get more money for research and a cure one day soon!!”
Breakthrough T1D Canada staff member Joey Wong was also in attendance at the Children’s Congress, sharing that by attending Children’s Congress, he saw firsthand how valuable it was for children diagnosed at an early age to find that they belonged to a community.
Delegates saw that they were not alone and there were others their age that had similar experiences as they did living with this disease. Younger delegates felt empowered to participate in event activities, and older delegates were not shy in acting as mentors. For some, the friendships they made will be life-lasting bonds.
They also benefited from hearing from T1D Role Models with backgrounds in journalism, athletics, fashion, and entertainment, who answered questions from delegates. These are inspiring individuals who, despite living with T1D, continued pursuing their passions and excelled in their fields. The Role Models shared their own personal T1D story and how they manage and overcome the disease in their own lives.
He was moved by a T1D community united in using their voices to advocate and drive positive change. Delegates and parents alike were motivated to share their story with anyone willing to listen and learn more about T1D. They were more than happy to explain the daily challenges of the disease, dispel any misconceptions and/or biases, and bring attention to how Congress can help.
During the same week the Children’s Congress took place, new legislation was introduced with bipartisan support to reauthorize the Special Diabetes Program, which was set to expire in September.
Regardless of age, Breakthrough T1D advocates continue to impress. Some delegates have little to no experience in advocacy and are nervous because of it, but it does not show in their meetings and instead, they put on a brave face when meeting with lawmakers and their staff. During meetings, it was clear that delegates are passionate about creating awareness, articulate in voicing their opinions, and determined to make a difference.
Kids for a Cure
Breakthrough T1D Canada holds our own advocacy event like the Children’s Congress, called Kids for a Cure, where young advocates living with T1D from across Canada to meet federal lawmakers in Ottawa to raise awareness of the disease and advocate for funding research progress towards a cure.
Kids for a Cure advocates are provided training and develop leadership and communication skills all while advocating for federal support of T1D research.
Advocacy remains one of the most important areas of Breakthrough T1D Canada’s work in improving the lives of Canadians living with T1D. Breakthrough T1D advocates are crucial in raising awareness, driving progress, and advancing breakthroughs.
By amplifying the voice of the T1D community, Breakthrough T1D Canada has been successful in bringing positive policy changes in Canada including:
- Breakthrough T1D-CIHR Partnership to Defeat Diabetes
- Disability Tax Credit and Canada Disability Benefit
- Framework for Diabetes in CanadaNational Pharmacare Program
- Improved public access to T1D technologies like insulin pumps and advanced glucose monitors
Kids for a Cure returns in 2026 and while it is still too early to start accepting applications, there will be plenty of opportunities for advocates.
Make your voice heard now:
Breakthrough T1D is engaging with Canada’s federal government, and you can use your voice to let your Member of Parliament know how they can support the T1D community in Canada. Advocates looking to get involved can do so by participating in our Federal Outreach Program Advocacy in Action and meeting with their Member of Parliament. Click here to sign up: BreakthroughT1D.ca/get-involved/advocate/
