A Wife and Mother Turned Diabetes Research Crusader

Diabetes is a 24/7 job, without breaks. And when you have two children with type 1 diabetes, the ramifications of a brief lapse in vigilance can be great, or even deadly.

It's weighing all of their food in order to know how many carbohydrates they're consuming. It's never leaving your home without a backpack full of supplies for emergencies. It's answering multiple questions a day over and over: How much food are they eating? How much insulin do they need? How much did they exercise? Do they seem anxious today, which can increase blood sugar levels?

Ann Arbor local Elizabeth Weiser Caswell never knew much about type 1 diabetes or how to manage it until her middle son was diagnosed in 2007.

"I knew I had to educate myself and become more involved. My husband, who also has type 1 diabetes, always took care of himself. Now, I needed to take care of my son," Caswell says.

Today, Caswell has spent more than a decade being a tireless champion for diabetes research and education. In her honor, her father, U-M Regent Ron Weiser, and his wife Eileen, have given U-M a $30 million gift named after her.

This is Caswell's story.

Growing their family

In 1991, grad student Caswell committed a major college-culture faux pas: she began dating and fell in love with her next door neighbor. She would soon learn this fellow student – her future husband – had type 1 diabetes.

"My husband, Trey, took care of himself," Caswell says. "I didn't have to be heavily involved in the management of his diabetes." 

Before getting married in 1998, Caswell and Trey started discussing if they wanted children or not: an issue that burdened him for risk of passing on diabetes. However, after much discussion, the couple decided to marry and start a family.

The pair had their first son in 2001. In 2004, another son came along. Finally, in 2006, the family became a party of five when their last son was born.

Little did Caswell know that when their middle son turned 3-years-old, he would be the second member of their family to receive a type 1 diagnosis.

A cause that lit a fire in her heart

Caswell started participating in walks hosted by JDRF, a nonprofit that funds type 1 diabetes research. After a few years, she was chairing the walks in Ann Arbor.

Then, in 2012, on the day before her oldest son's first day of sixth grade, something seemed off when he awakened in the middle of the night. Her oldest missed what should've been an exciting day when, like his father and brother, he was told he had type 1.

"Now three of my family members are living with type 1 diabetes. At first, you're just trying to keep your head above water, and it can take months to catch your breath," Caswell recalls. "Then, you try to regain control of your life, and your children's lives. That's what I did."

She started to become more involved with her JDRF chapter board, planning events and touring research labs, where she developed a strong interest in diabetes research and education.

"I actually wanted to be a doctor when I was in college, but science wasn't my strong suit," she says. Her curiosity for learning more about the disease's mechanism and research on cures, combined with her public policy and non-profit management training furthered her commitment to JDRF. 

She joined their international Research Committee in 2017. This summer she will join the organization's International Board.

A day in the life

It takes constant awareness to be a parent of a child with T1D, let alone being the parent of two with the disease. Hypoglycemia, or dangerously low blood sugar, may not show any symptoms until someone becomes unconscious.

"My husband will wake up if he has low blood sugar, but my 15-year-old sleeps through that," Caswell says. "I'm thankful for technology that can sound an alarm if his blood sugar is too low, but this technology hasn't always been around. Advances in treatments allow my family members to live a much better life now than when my husband was diagnosed in 1988."

Aside from the pressure of making sure her children's diabetes is being well-managed, there's the need to try and make life "normal" too. That's why the family still plays sports and keeps ice cream in the freezer that everyone can have. 

"It's all about balance and moderation, just like it is for people not living with a chronic disease," she adds.

Sugar and insulin are often discussed when learning about the inner workings of diabetes, but the disease is more involved than that. Caswell says it's a difficult puzzle to figure out, especially when researchers don't have all the puzzle pieces – which is why she is so dedicated to helping further that research.

"The burden of this disease is immense. It can be almost completely invisible. You don't look sick, but there are days you feel awful and have to keep living your life," Caswell says. "There are so many potential complications from diabetes, from physical to psychosocial and financial. That's why finding answers through research is imperative. Michigan Medicine is asking insightful questions to help solve more of the puzzle."

The future of diabetes care

Caswell's husband and sons are three of the 34.2 million people that have diabetes, or 10.5% of the U.S. population. And according to the Centers of Disease Control and Prevention, the rates for both type 1 and type 2 diabetes are on the rise. Between 2002 and 2015, for Americans younger than 20 years old, there's been a 4.8% increase per year for type 2, and a 1.9% increase per year for type 1.

In an effort to improve clinical care and education and to further develop lifesaving therapies and cures, the $30 million gift from the Weisers establishes the Elizabeth Weiser Caswell Diabetes Institute. This will centralize and coordinate campus resources, as well as allow U-M to bring new depth and discovery to the quest for answers to diabetes.

"I'm so grateful that my family could make this gift to promote scientific advances in treatments and cures for diabetes, and to support collaboration across other disciplines such as psychology, public health, social work, public policy, business, and more," Caswell says. "Any scientific advances must be affordable and accessible. Issues of inequity in health care and in healthy food access must be addressed. This interdisciplinary approach is so inspirational and can't help but make me and millions of others hopeful for the future."

Although Caswell's oldest son in now 19 and independently manages his diabetes, it's a difficult transition to be completely self-sufficient, like remembering to order supplies on time and make important appointments.

Inspired by the support her son received from the pediatric endocrinology team, part of the funds from her family's gift will also create the Caswell Family Fellowship in pediatric endocrinology. The fellowship will help ensure a new generation of researchers are trained to continue investigations that mitigate the impact of the disease and to provide top quality clinical care, Caswell says.

"Insulin isn't a cure. It's only a treatment. We are so grateful for advances in treatment that reduce the daily burdens of living with diabetes," she says. "Great research is happening, cures for those with diabetes are on the near horizon. I can't wait for the day when my loved ones can say they used to have diabetes."