Breakthrough T1D (Formerly JDRF) Offers Resources to Adults with Type 1 Diabetes

Type 1 diabetes has several stigmas, the most prevalent being it’s a children’s disease. The common misperception that only adolescents get type 1 diabetes has clouded the condition’s identity, causing misdiagnoses between type 1 and 2.

Initially called insulin-dependent juvenile diabetes, we see it is often presented in adults. A recent study by Emory University concluded that type 1 diabetes is much higher among adults than previously thought. The global study published in ADA’s Journal of Diabetes Care covered over 32 countries worldwide. Furthermore, research shows that more than half of all new type 1 cases occur in adults.

Also, contrary to popular belief, Breakthrough T1D, formerly called the Juvenile Diabetes Research Foundation (JDRF) offers resources to children, teens, and adults.

About Breakthrough T1D (Formerly JDRF)

“Never doubt that a small group of thoughtful, committed individuals can change the world. In fact, it’s the only thing that ever has.”

The above quote by Margaret Mead may best describe Breakthrough T1D’s humble beginnings.

When Philadelphia mom Lee Ducat’s nine-year-old son was diagnosed with juvenile diabetes, she decided to act rather than cry into her pillow. She held a small cocktail party to raise funds and unite type 1 parents in the community. That night, May 23, 1970, the Juvenile Diabetes Foundation was born.

Carol Lurie's 10-year-old son was also diagnosed in New York City. Lurie reached out to Ducat, and the two slowly connected with other T1D parents nationwide. Next, the two moms hit Washington, D.C., for federal funding. Through incredible grassroots efforts, the women gained federal support for diabetes research that is still in place today.

Since its inception, Breakthrough T1D has grown into the world’s largest non-profit funder of type 1 diabetes research. With in-house scientific research covering diverse topics, Breakthrough T1D has led the race for a cure since and is now an international powerhouse serving the type 1 community – an ever-growing faction of every race, color and age.

Explore Breakthrough T1D– It’s Not Just for Kids

Type 1 Strong had the pleasure of talking to Mike Somers, Breakthrough T1D Market Director for the Mountain West Chapter, on the challenges young adults face, the support Breakthrough T1D offers, and exciting Breakthrough T1D research.

Somers, who lives with his family in Woods Cross, Utah, began his career with Breakthrough T1D, volunteering and serving on the Utah board. In 2014, he became the Market Director for the Mountain Valley Chapter, which supports Utah and Idaho and is now the Intermountain West Market Director, covering Utah, Colorado, and Wyoming.

Somers said Breakthrough T1D’s mission is stronger and more focused than ever. With the help of Advocacy teams and Community Engagement teams, they help patients with health coverage hurdles and explain certain health advancements, benefits, and critical resources.

Somers had a childhood friend with diabetes, and a cousin’s daughter was diagnosed in 2022, but beyond that, he has no direct family connection to T1D.

T1D Misperceptions

More people are being diagnosed with type 1 diabetes than ever before. The CDC’s latest statistics report concurred diagnoses jumped 30% during 2017-2020. Moreover, research is beginning to suspect cases have increased since the COVID-19 pandemic. The NIH’s National Library of Medicine cited that COVID has triggered the emergence of T1D and may mask symptoms of the severe condition, diabetic ketoacidosis (DKA).

With the recent surge in diagnoses, universal screening for T1D is more crucial than ever. Somers provided information from Breakthrough T1D's research team. “2+ autoantibodies—antibodies directed toward your own body—means you have an almost 100% chance of developing T1D in your lifetime. As a result of Breakthrough T1D-funded research, we can identify those at highest risk for developing T1D—2+ autoantibodies—and we have funded screening programs in place, first introduced in the late 1980s.”

More recently, Breakthrough T1D launched the T1Detect Type 1 Diabetes Risk Screening. This education and monitoring program broadens screening awareness and access to the general population. Somers said Breakthrough T1D’s goal is global universal screening. Testing is critical to developing disease-modifying therapies like Tzield™ an FDA-approved drug that delays T1D in at-risk individuals. The drug delays type 1 diabetes by a median of about two years in clinical trials.

People incorrectly think Breakthrough T1D is only for children, but there are several adult activities and support groups.

“More adults are living with and being diagnosed today with T1D than children," said Sommers. “Many of our supporters started as children and are now thriving as adults because of the research we have funded. This disease is not easy. Despite the tremendous advances, T1D is hard, and we need to help support everyone living with the illness.”

In addition to funding T1D research, Breakthrough T1D provides a vast array of events and services to the T1D community. Activities include fundraising walks, golf and tennis tournaments, galas, and bike races just to name a few.

Breakthrough T1D Resources

Breakthrough T1D E-Meet and Greets for Newly Diagnosed TIDs

Online Breakthrough T1D also hosts a Newly Diagnosed Meet Up for Adults and Teens. The E-Meet and Greet is a forum every Wednesday night, 7:00 p.m. EST, for T1Ds or T1D caretakers looking to connect with others. The free virtual Meet and Greets offer a great resource to make friends across the states. Every other session hosts a special guest. Participants are welcome to ask questions, share advice and receive support.

Somers said the e-meet-ups have been in place since before the pandemic. “Several veteran families join these meet-ups to provide emotional support and help answer questions. Despite our efforts to support all ages and stages of T1D, people still incorrectly believe that Breakthrough T1D is just for children. To our credit, the research we fund benefits all people living with T1D and creates better outcomes for all. We here in Utah are trying to get more adults involved in these groups. As our great supporters drive us, we need more adults to lean in and help us run these meet-ups. We can’t provide all the resources, so we need help spreading the word and growing these much-needed groups. The Bag of Hope® was founded here in Utah and had such an impact on newly diagnosed children we soon adopted the same resources for teens and adults.”

Breakthrough T1D Bag of Hope for Adults

Like the Bag of Hope that recently diagnosed children receive, Breakthrough T1D offers a “No Limits™ Teen care kit” and a “No Limits™ Adult care kit” stocked full of information and tools for newly diagnosed T1D adults. The resource bag includes an inspirational bookmark designed by T1D influencer Carly B @carly.with.diabetes, colorful Breakthrough T1D/Beyond Type 1 Alliance water bottle stickers, and an illustrated overview of low and high blood sugar causes with symptoms and treatments. The Adult care kit is available for adults 18 and older living in the United States.

“At any age, a T1D diagnosis is overwhelming. Teen and adult care kits are a free resource and support for the newly diagnosed,” said Somers. “Our website has a tremendous amount of resources for all ages and stages of T1D.”

Breakthrough T1D has helped thousands of individuals throughout the years by educating families, schools and people living with type 1 diabetes. If you live outside the U.S., check out Breakthrough T1D’s international affiliates.

Adults can also download the helpful “Begin with Hope” resource guide for adults on the Breakthrough T1D website.

Breakthrough T1D On-Call Help Line – You are Not Alone!

So many young people today battle anxiety and depression, and it seems to have worsened since COVID-19. Breakthrough T1D’s Online Diabetes Support Team (ODST) comprises volunteers who have experienced the same challenges living with type 1 diabetes. T1Ds can contact this compassionate group with questions, and they will try to respond within 48 hours. (As the team comprises volunteers, they cannot offer medical or legal advice.)

Somers stressed the importance of staying connected as a community, supporting each other and sharing vital information is more critical than ever. Through Breakthrough T1D's Community Engagement Team, there are several ways for individuals to help, stay in touch remotely and continue learning about life-changing breakthroughs in T1D treatments and therapies. Breakthrough T1D (formerly JDRF) Community is a great place to start.

“The psychosocial part of T1D has a large effect on health outcomes, and part of Breakthrough T1D’s research portfolio is funding treatments.”

Breakthrough T1D No Limits Speaker Series

This virtual program offers four educational sessions yearly with medical experts discussing T1D topics. It’s designed exclusively for newly diagnosed individuals and caregivers. Beyond medical subjects, the sessions by industry professionals cover topics like T1D in the Workplace – Know Your Rights and Balancing Mental Health & T1D—especially important during the holiday season. If you miss a live session, you can watch the playbacks here.

Breakthrough T1D TypeOneNation

TypeOneNation is a Breakthrough T1D's social network for people with type 1 diabetes and their families and friends. The type 1 community host and feature diverse individuals who share lively conversations, experiences and information. Anyone over 13 can sign up to join this amazing community.

For other virtual events, check the website to learn more about what Breakthrough T1D offers near you.

T1D Cures On the Horizon

When asked what Breakthrough T1D research Somers is most excited about, he said, “For me, it is cures(plural), research, specifically, cell therapies.”

Somers provided information from Breakthrough T1D's research team on cell replacement therapies, including stem cell-derived islet therapy. “Leading the way in clinical trials is Vertex Pharmaceuticals. Vertex launched its clinical trial of VX-880, a stem cell-derived islet therapy in T1D for individuals with hypoglycemia unawareness, in combination with immunosuppressive therapy to protect the cells from rejection, in the summer of 2021. Six participants have received this therapy, and two are now insulin-independent. The treatment exceeded the ADA target time-in-range (>70%) and met the primary endpoint of eliminating severe hypoglycemia events.”

“Based on the data, the phase I/II study advanced to Part C in full target dose. In summary, VX-880 has the potential to achieve insulin independence, as well as eliminate severe low blood-sugar events and significantly improve blood-sugar control. Vertex’s phase I/II clinical trial of VX-880 was pioneered by Doug Melton, Ph.D., whose years of Breakthrough T1D (formerly JDRF)-funded research led to successfully transforming stem cells into beta cells in 2014 and a catalytic investment from the T1D Fund in Semma Therapeutics—a biotech company founded by Melton to develop a stem cell-derived islet therapy for T1D, which Vertex Pharmaceuticals acquired.”

“Breakthrough T1D has also funded Sernova, who provided an update on the phase I/II clinical trial of their Cell Pouch™—an implantable device designed to form a natural environment and allow the survival and function of insulin-producing (islet) cells. This device uses islets from deceased donors. Six individuals received the therapy in the first cohort, and five remained insulin-independent, going from six months to over three years. Observations from the first cohort led to a higher-capacity Cell Pouch, which provides up to 56% more volume to accommodate more islets. Five of the seven planned participants have been enrolled in the second cohort. Breakthrough T1D continues to support Sernova to make their Cell Pouch part of the cures portfolio.”

Hope is the Thing with Feathers

Emily Dickinson’s poem captures the fragility and power of hope. Breakthrough T1D’s catch phrase “I am Greater Than my Highs and Lows” serves as a reminder that T1D doesn’t define individuals; it creates heroes. Sayings like “I’m the Tougher than You Can Imagine Type” stir confidence in children and adults battling the condition.

Somers said he would tell a newly diagnosed adult, “First, it will be okay. It is never easy, but it will get easier. If you did not receive a Bag of Hope, please order one from us here. We at Breakthrough T1D have an outreach ambassador for you should you need something from a T1D caregiver who has been there with their child. Community is very important; Breakthrough T1D and the T1D community are here to help. Please give yourself some grace as you begin this new life, and know you can do it! I would also guide them to our website, which has tons of information to help them navigate this new reality. You can find info on navigating insurance, T1D and School, Exercise, Nutrition, T1D tech, etc.  Beyond Type One is another great resource for information, should you need it.”

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