JDRF
Intro: Meet Sarah AlterImagine being on vacation with your family and… not knowing if you would wake up the next day. For those living with type one diabetes, that's a very real possibility, if your blood sugar drops too low. You have to plan every moment, every detail of your life, meticulously, and still there are no assurances.
Or at least that was the case before technology like the artificial pancreas system and the good works of JDRF, which is leading the fight against type one diabetes (T1D). What was once thought of as "juvenile diabetes,” because it was frequently diagnosed in young children, is now known to affect people of all ages. Today, an equal number of children and adults are diagnosed—approximately 110 people per day. The staggering figure includes 1.6 million in the U.S. alone, an increase of 30% in the last two years. By 2050, that number is expected to grow to five million.
The price of insulin, that life-saving drug for those with T1D, moreover, doesn't come cheap—one vial can cost $300 and a person can need up to six vials a month.
Which is why we're proud to partner with the organization and spotlight Sarah Alter as our #VBGivesBack woman of the quarter. By day, she's the president and CEO of the Network of Executive Women; by night, she's a heavyweight fundraiser and philanthropist for JDRF. The cause is a personal one: Her husband, Michael is a leader in the organization and has type one diabetes himself.
Here, we talk to the Chicago-based Alter about the group, its gains over the disease to provide a better quality of life, and why diabetes is a family affair.
Q&A
JDRF is…
The leading global nonprofit funding type 1 diabetes research. Our strength lies in our exclusive focus on the worldwide effort to end T1D and the power of our volunteers.
The leading global nonprofit funding type 1 diabetes research. Our strength lies in our exclusive focus on the worldwide effort to end T1D and the power of our volunteers.
Why type 1?
JDRF was founded in 1970 by two moms determined to find a cure for not just their children with T1D, but everyone with type 1 diabetes.
JDRF was founded in 1970 by two moms determined to find a cure for not just their children with T1D, but everyone with type 1 diabetes.
Could you explain the difference between type 1 and type 2?
T1D is an autoimmune disease—it attacks the cells in your pancreas that produce insulin. People who have type 1 are insulin dependent because their bodies don't produce it, and you need that to live. Type two means your body is still producing insulin, but it's not using the insulin in the ways it should. Some people with type two need insulin; many do not.
T1D is an autoimmune disease—it attacks the cells in your pancreas that produce insulin. People who have type 1 are insulin dependent because their bodies don't produce it, and you need that to live. Type two means your body is still producing insulin, but it's not using the insulin in the ways it should. Some people with type two need insulin; many do not.
What led to the name change from Juvenile Diabetes Research Foundation to simply JDRF?
The reality is type 1 diabetes doesn't just affect children. The facts would tell you that, yes, a higher percentage of the total new diagnoses happen in juveniles, but the reality is that almost as many are adults. The community we serve is everyone with T1D.
The reality is type 1 diabetes doesn't just affect children. The facts would tell you that, yes, a higher percentage of the total new diagnoses happen in juveniles, but the reality is that almost as many are adults. The community we serve is everyone with T1D.
Why is this cause such a crucial one?
Diabetes effects over 34 million Americans and this continues to grow at alarming rates. There are currently more than 1.6 million people with type 1 diabetes in the US, which has increased 30% in just the last two years. More than five million people are expected to have T1D by 2050, including a 3x increase of youth cases. 64,000 people are estimated to be diagnosed each year with type 1 diabetes in the U.S., across all age groups with nearly half being diagnosed as adults.
Diabetes effects over 34 million Americans and this continues to grow at alarming rates. There are currently more than 1.6 million people with type 1 diabetes in the US, which has increased 30% in just the last two years. More than five million people are expected to have T1D by 2050, including a 3x increase of youth cases. 64,000 people are estimated to be diagnosed each year with type 1 diabetes in the U.S., across all age groups with nearly half being diagnosed as adults.
How did you become involved with JDRF? What first drew you to the organization?
To add to your earlier answer about how T1D affects both adults and children—my husband, Michael, was diagnosed at age 22. There was no history of anyone in his family having had it. There was, however, a large footprint of people who were impacted by a variety of autoimmune diseases, and diabetes is one. He ended up finding JDRF, through his endocrinologist, when he was in his early forties. Michael had reached a point in his life when he realized his body had had enough. Then one of the leaders of JDRF, Jim Tyree—I'd call him the patriarch of Chicago and all that is JDRF—encouraged him to step up and be a leader in the organization. And that's how we became involved. It's been 10 years now.
To add to your earlier answer about how T1D affects both adults and children—my husband, Michael, was diagnosed at age 22. There was no history of anyone in his family having had it. There was, however, a large footprint of people who were impacted by a variety of autoimmune diseases, and diabetes is one. He ended up finding JDRF, through his endocrinologist, when he was in his early forties. Michael had reached a point in his life when he realized his body had had enough. Then one of the leaders of JDRF, Jim Tyree—I'd call him the patriarch of Chicago and all that is JDRF—encouraged him to step up and be a leader in the organization. And that's how we became involved. It's been 10 years now.
What kind of support does the organization provide?
JDRF’s mission is to improve lives today and tomorrow by accelerating life-changing breakthroughs to cure, prevent and treat type 1 diabetes and its complications. Research is our focus, but is just one of three areas at JDRF that work together to drive meaningful impact on the lives of our T1D community. We make a distinctive impact every day by combining the powerful work of Research, Advocacy and Community Engagement.
1. Research—we have more than 180 active research grants with 400 researchers, over 70 JDRF-funded clinical trials and over $2.2 billion committed in research grants since our founding in 1970.
2. Advocacy—we work with Congress, the Food & Drug Administration and other organizations to ensure coverage, affordability and choice for all. We have more than 5,000 meetings conducted with members of Congress and their staff each year. We've made sure that all 25 of the US largest private health insurers provide coverage for an artificial pancreas system for people with T1D. Nobody should be in a situation to ration insulin, and it shouldn't need a copay because it's a life-saving drug.
3. Community Engagement—we provide education to help families from diagnoses all the way through the different stages of living with type one diabetes. Nearly 1 million people join our events each year and our education materials reach more than 200,000 families—e.g. back to school materials, Bag of Hope for newly diagnosed families…. Our healthcare professional trainings reach more than 54,000 members of the medical community.
JDRF’s mission is to improve lives today and tomorrow by accelerating life-changing breakthroughs to cure, prevent and treat type 1 diabetes and its complications. Research is our focus, but is just one of three areas at JDRF that work together to drive meaningful impact on the lives of our T1D community. We make a distinctive impact every day by combining the powerful work of Research, Advocacy and Community Engagement.
1. Research—we have more than 180 active research grants with 400 researchers, over 70 JDRF-funded clinical trials and over $2.2 billion committed in research grants since our founding in 1970.
2. Advocacy—we work with Congress, the Food & Drug Administration and other organizations to ensure coverage, affordability and choice for all. We have more than 5,000 meetings conducted with members of Congress and their staff each year. We've made sure that all 25 of the US largest private health insurers provide coverage for an artificial pancreas system for people with T1D. Nobody should be in a situation to ration insulin, and it shouldn't need a copay because it's a life-saving drug.
3. Community Engagement—we provide education to help families from diagnoses all the way through the different stages of living with type one diabetes. Nearly 1 million people join our events each year and our education materials reach more than 200,000 families—e.g. back to school materials, Bag of Hope for newly diagnosed families…. Our healthcare professional trainings reach more than 54,000 members of the medical community.
The Alter family at a JDRF event, photographed by David Blachman
Tell us more about that community element…
JDRF has a wonderful community-driven perspective of "Michael isn't the diabetic; this family has a diabetic." Because diabetes affects more than the individual; it's a family challenge and opportunity. There's the reality that our children and our children's children could have it, and have to navigate the same journey—that's one dynamic at play. The other is that, as a family, we need to be aware of the potential signs for Michael. What are the signs of low or high blood sugar? What do we need to be doing? My daughter was so fascinated by all of it she ended up interning at the University of Illinois Pavilion, in a lab with one of the scientists focused on type one diabetes.
JDRF has a wonderful community-driven perspective of "Michael isn't the diabetic; this family has a diabetic." Because diabetes affects more than the individual; it's a family challenge and opportunity. There's the reality that our children and our children's children could have it, and have to navigate the same journey—that's one dynamic at play. The other is that, as a family, we need to be aware of the potential signs for Michael. What are the signs of low or high blood sugar? What do we need to be doing? My daughter was so fascinated by all of it she ended up interning at the University of Illinois Pavilion, in a lab with one of the scientists focused on type one diabetes.
What has been your most memorable moment with the organization?
When we served as the Fund a Cure family—we got to share our story and how type one has impacted our lives. We were able to tell others that, yes, type one diabetes is a scary thing but when you've got an incredible organization like JDRF to guide you, it makes it a lot less scary and more manageable—you see a brighter future. That was an eye-opening moment for our kids, who were there. They were able to see how challenging it has been for Michael and how brave he has been tackling it—and how brave he has been in sharing his story and helping others.
When we served as the Fund a Cure family—we got to share our story and how type one has impacted our lives. We were able to tell others that, yes, type one diabetes is a scary thing but when you've got an incredible organization like JDRF to guide you, it makes it a lot less scary and more manageable—you see a brighter future. That was an eye-opening moment for our kids, who were there. They were able to see how challenging it has been for Michael and how brave he has been tackling it—and how brave he has been in sharing his story and helping others.
How has the organization changed since its founding?
JDRF has expanded to become the largest charitable supporter of T1D research in the world. In fact, JDRF has played a role in nearly every major advance—drug, device, cell therapy—made in type one diabetes in the last 50 years. We work with researchers, institutions, universities and consortia all over the world, funding research in 20+ countries. We also invest, via the JDRF T1D Fund, in commercial projects showing promise of positively impacting the T1D community.
JDRF has expanded to become the largest charitable supporter of T1D research in the world. In fact, JDRF has played a role in nearly every major advance—drug, device, cell therapy—made in type one diabetes in the last 50 years. We work with researchers, institutions, universities and consortia all over the world, funding research in 20+ countries. We also invest, via the JDRF T1D Fund, in commercial projects showing promise of positively impacting the T1D community.
What are some of the milestone moments?
The biggest milestones are related to technology—like the closed-loop artificial pancreas, which automatically controls insulin doses. Before an insulin pump was the size of a backpack; now it's as small as a pager and, if you wear an Omnipod, it's even smaller than that. The reason an artificial pancreas is so powerful is because it's both a continuous glucose monitor and an insulin pump—they talk to each other and, using algorithms, work as close to a pancreas as possible. And this is all really new still. The first closed-loop technology was approved three years ago; the second, just this December.
The biggest milestones are related to technology—like the closed-loop artificial pancreas, which automatically controls insulin doses. Before an insulin pump was the size of a backpack; now it's as small as a pager and, if you wear an Omnipod, it's even smaller than that. The reason an artificial pancreas is so powerful is because it's both a continuous glucose monitor and an insulin pump—they talk to each other and, using algorithms, work as close to a pancreas as possible. And this is all really new still. The first closed-loop technology was approved three years ago; the second, just this December.
Its greatest challenges today?
Ensuring access and availability on the latest technologies—i.e. closed loop/artificial pancreas systems—for ALL people living with the disease.
Ensuring access and availability on the latest technologies—i.e. closed loop/artificial pancreas systems—for ALL people living with the disease.
Tips for our readers to get involved…
Become an advocate, learn more about diabetes, volunteer in your local community and donate to help us find cures and improve lives for all impacted by this life-changing disease.
Become an advocate, learn more about diabetes, volunteer in your local community and donate to help us find cures and improve lives for all impacted by this life-changing disease.
What's one thing you want people who read this to step away with…
JDRF plays such a crucial role and it does so, really, in two ways:
1. It serves and supports the person with type 1 diabetes and his or her family, helping them navigate their way through this challenging life journey.
2. It's made incredible traction and progress in identifying a cure or cures that can make type none be a reality.
There are a lot of not-for-profits out there, but many talk a lot about facts and figures; they never really deliver on progress. JDRF does. It actually provides solutions and is impacting lives and communities. For me, when you look at where you're going to donate that next dollar, you want an organization that delivers on that mission.
JDRF plays such a crucial role and it does so, really, in two ways:
1. It serves and supports the person with type 1 diabetes and his or her family, helping them navigate their way through this challenging life journey.
2. It's made incredible traction and progress in identifying a cure or cures that can make type none be a reality.
There are a lot of not-for-profits out there, but many talk a lot about facts and figures; they never really deliver on progress. JDRF does. It actually provides solutions and is impacting lives and communities. For me, when you look at where you're going to donate that next dollar, you want an organization that delivers on that mission.
