Drema W

Participant

University of Chicago

"There was no research being done during my mom's time and now that there is, so many people are benefiting, lives are being extended, and there is more awareness."

I attended a Health Fair in 1998 and stopped by the University of Chicago's DPP table. It was of interest to me because I have a family history of diabetes. So, I took the brochure, read it, did my research, contacted the UofC the following week, and the rest is history. Being in the DPP for the last 27 years has taught me how to take care of my health and to be intentional about it. My husband even benefited because when I changed my life, it also changed his. I have learned to eat healthy, exercise, and pay attention to my body. Over the course of the study, I learned how to lose weight and maintain that loss in a healthy way, and to pay attention to other health indicators such as cholesterol, kidney function, eyes, heart and feet. I feel this study was a godsend for me because my mom and 3 of her siblings had diabetes, as well as my grandmother. My grandmother, my mom and one of her sisters died as a result of diabetes. With that family history, I knew it would be a miracle if I did not get it. There was no research being done during my mom's time and now that there is, so many people are benefiting, lives are being extended, and there is more awareness. I am glad that I am a part of the study/research and hope that this study/research continues so that more people can become more educated and learn to take more control of their health. I am an advocate for my own health, and I will do anything to improve it, so I would tell anybody who is considering joining a research group, to just do it. What do you have to lose? The benefits will always outweigh the cons, and it may help save your life or at least improve it.

Kathleen Graham

Participant

New York

"Over the years she has taken pride in helping produce data underscoring the advice that she and other medical professionals give to patients with diabetes."

Cancer researchers examining the use of artificial intelligence to detect early signs of breast cancer. Pediatricians tracking the long-term health of children born to mothers infected with the coronavirus during pregnancy. Scientists searching for links between diabetes and dementia.

All these projects at Columbia University were paid for with federal research grants that were abruptly terminated following the Trump administration’s decision to cut $400 million in funding to Columbia over concerns regarding the treatment of Jewish students.

Dozens of medical and scientific studies are ending, or at risk of ending, leaving researchers scrambling to find alternative funding. In some cases, researchers have already started informing study subjects that research is suspended.

Honestly, I wanted to cry,” said Kathleen Graham, a 56-year-old nurse in the Bronx, upon learning that the diabetes study she had participated in for a quarter of a century was ending.

At Columbia’s medical school, doctors said they were in shock as they received notice that their funding was terminated. Some expressed resignation, while others sought a stopgap solution and asked whether the university could fund some of the staff on the projects in the short term, according to interviews with five doctors or professors who had been affected.

“The most immediate need is to bridge in the short term and figure out what the longer-term plans are,” said Dr. Dawn Hershman, the interim chief the division of hematology and oncology at Columbia’s medical school. “That’s what is being worked out.”

About $250 million of the $400 million in cuts imposed this month involved funding from the National Institutes of Health. Each year, the N.I.H. distributes billions of dollars in research funding to universities for biomedical and behavioral research. Those grants are a major engine of medical progress — and, for many scientists and medical researchers, of successful careers.

In interviews, several Columbia researchers who received grant cancellation notices during the past week and a half said they assumed that their canceled grants were part of the $400 million in cuts that the Trump administration had announced. But they said they had no way of knowing just yet — a reflection of the chaos and uncertainty engulfing labs and clinics across the nation.

Last year, Columbia became the epicenter of a national student protest movement against the war in Gaza. Pro-Palestinian demonstrators established an encampment on campus and occupied a university building. Some Jewish students said they experienced harassment walking around or near campus, or were ostracized. The university president requested that the Police Department clear out the demonstrators and later resigned amid fury over her handling of the divided campus.

The Trump administration has blamed Columbia University, saying it did too little. Invoking federal anti-discrimination law, it has cut research funding to Columbia.

In addition to cutting research grants, the Trump administration has removed funding for clinical fellowships for early career doctors who were developing a specialty in oncology and several other fields. Other grants eliminated money for hiring research nurses and other support staff needed for clinical trials, Dr. Hershman said.

The sudden, deep cuts appear to be exceedingly rare, if not unprecedented. Some legal scholars say that the administration’s tactics might violate the First Amendment and that the government appears to have ignored the procedures and restrictions laid out in the same anti-discrimination law it has cited. Since announcing the cuts, the Trump administration has demanded that Columbia make dramatic changes to student discipline and put an academic department in receivership as a precondition to negotiations “regarding Columbia University’s continued financial relationship with the United States government,” according to a letter sent Thursday by federal officials.

The cuts will be felt most immediately by research scientists and doctors, many of whom work mainly at Columbia’s medical school and affiliated hospital, NewYork-Presbyterian/Columbia, some 50 blocks north of Columbia’s main campus.

In interviews, they expressed shock and sadness that their research projects were cut so abruptly. Dr. Olajide A. Williams, a neurologist and professor at Columbia’s medical school, had two grants that were terminated this month. His research often focuses on health disparities and how to narrow them.

One grant was to study factors that led to better stroke recovery among poor and socially disadvantaged patients. Another grant explored how to increase screenings for colorectal cancer — which is rising among younger adults — across New York City.

“As I sit here trying to do this work, I truly believe to right a wrong with another wrong frays the fabric of justice,” said Dr. Williams. “Fighting the horrors of antisemitism by punishing the nobility of health disparities research creates a cycle of injustice that causes pain on all sides.”

He said he was stunned.

“Right now, I’m sitting in that pain trying to navigate the reality of what just happened to my grant portfolio,” he said.

More than 400 grants to Columbia University were terminated, according to the National Institutes of Health. Some of the grant cancellations will be felt far beyond Columbia. Large-scale studies can involve researchers at several universities, but, for administrative ease, the grant is linked to a single university. As a result, the cuts jeopardized some research projects involving numerous universities.

Last week Dr. David M. Nathan, a Harvard Medical School professor, learned that funding for the diabetes research project — following a group of 1,700 people over more than 25 years — had been cut.

“The funding flows through Columbia, which is why we were vulnerable,” Dr. Nathan said. “When the N.I.H, or whoever made this decision, decided to target Columbia’s funding, we were just kind of swept up in this.”

That research project had grown out of a landmark study that demonstrated the effectiveness of lifestyle interventions and the medication metformin at reducing Type 2 diabetes. Those findings were released in 2001. Dr. Nathan and others followed the same participants over the next quarter-century. The latest phase, which was funded through Columbia, searched for links between diabetes and dementia.

Ms. Graham, the nurse in the Bronx, said that as part of that study, she had recently undergone tests and had her gait analyzed for early signs of any neurological problems. Over the years, she said, she has taken pride in helping produce data underscoring the advice that she and other medical professionals give to patients with diabetes.

Dr. Nathan said that the latest phase was two years into a five-year study.

“This is also colossally wasteful,” he said. “We haven’t collected all the data we hoped to collect.”

Dr. Jordan Orange, who heads the Department of Pediatrics at Columbia’s medical school, said one project that lost funding involved the search for a nasal spray that would block the entry of viruses and reduce infections.

“How wonderful would it be if we had a nasal spray that could block viruses?” Dr. Orange said.

According to Lucky Tran, a spokesman for Columbia University Medical Center, other canceled studies include one focused on reducing maternal mortality in New York and another on treatments for chronic illnesses, including long Covid.

Last week, researchers were trying to catalog which research had lost funding and which projects survived. “We’re still in the process of trying to figure out all of the grants,” Dr. Hershman said.

Photo and text source: https://www.nytimes.com/2025/03/18/nyregion/columbia-research-grants-trump.html?unlocked_article_code=1.404.Xobt.rEkq7tSb7q_E&smid=url-share

Maria Montez

Research Team

Texas

"It was a wonderful experience meeting so many scientists, nurses, dietitians, and biostatisticians nationwide and the long-time friendships that are still on-going!"

This is Maria Montez, Program Coordinator for DPP since the beginning of DPP until my retirement in May 2018. It was a wonderful experience meeting so many scientists, nurses, dietitians, and biostatisticians nationwide and the long-time friendships that are still on-going! We provided research-based care to our many study participants and community service to our states nationwide! Congratulations DPP for 30 years of science and service to our states nationwide! Enjoying my retirement cruising around the world!

My parents' wedding, 75 years ago, with their parents and grandparents.

Nina Peskoe Peyser

Participant

New York

"We clearly felt that we were informing the field and our involvement would benefit the future."

My career as a health care administrator began 50 years ago, and at first it centered around treatment for people with substance abuse issues. Our primary drug treatment program involved methadone maintenance, a proven effective medication for heroin addiction. But our patients and our treatment program were often criticized by individuals who said we were just substituting one drug for another. We countered with the example of insulin for the treatment of diabetes. No one imposed value judgments on diabetic patients who couldn't manage their condition solely by diet and willpower, so why were patients being treated for substance abuse disparaged for taking medication that reduced cravings and withdrawal symptoms?

The political climate at the time forced our program to have extensive waiting lists of people who wanted treatment but could not be admitted. Finally, when the HIV/AIDS epidemic hit New York, the public health leadership started to realize that getting injection drug users into treatment was a very effective way to reduce many of the risky behaviors that led to the spread of HIV. We extended the clinical program to embrace research projects, especially focused on the prevention of HIV/AIDS and the respectful treatment of people who had been exposed to the HIV/AIDS virus while they were actively using drugs.

This began my exposure to the clinical and epidemiological research field, and I created a department for research administration. Part of educating myself and my staff about human subjects research included learning about protections, regulations, informed consent, Institutional Review Boards, and ethical issues, and we decided that we would each enroll in some sort of research study to see how it felt to be a participant.

Several people in my extended family had been greatly affected by diabetes, including my grandmother (who lost a leg), my uncle (who played the piano professionally until diabetes-related neuropathy made that impossible), and my brother-in-law (who was diagnosed with Type 1 diabetes while in his 20s). So when I saw an announcement about participating in a research study to prevent diabetes, I jumped at the chance. I was so lucky that the Diabetes Prevention Study was at a nearby hospital, and that I was eligible based on my personal risk factors and my family history. I was able to see both sides of clinical research: the professional administrative processes (and, to be fair, some of the associated bureaucracy and hurdles) as well as the vantage point of a research subject (including what seemed like a lot of blood draws and questionnaires). I could tell that the research staff cared very much about the well-being of the participants.

We all were reminded that a research subject is not guaranteed any direct benefit from the study--but we clearly felt that we were informing the field and our involvement would benefit the future. We were treated with dignity and support, and even now, more than 25 years later, it is overwhelmingly clear that the research staff and investigators prioritize us.

The personal satisfaction that I get from knowing that my contributions have already resulted in improved knowledge and opportunities for preventing diabetes in other families would be reward enough. In my case, I have also been very fortunate in that I have not developed diabetes, and I am very sure that it was my early involvement in this study that happened to randomize me to the study medication arm that in fact prevented my progression to diabetes.

Sue Shapiro

Research Team

Washington, DC

"I have learned so much from this exceptionally loyal and dedicated group."

I was once asked what stands out as one of my most meaningful projects and without hesitation, I answered the landmark DPP/DPPOS study. I have had the privilege of working on this study since 1998 and it has been meaningful to me for many reasons both on a professional and personal level. The science behind the DPP/DPPOS and the significant impact the results have had in Type 2 Diabetes, and the Diabetes community at large speaks for itself, and I feel very proud to have contributed to its success.

On a personal level, it has been my interactions with the DPP/DPPOS study participants that have been the most meaningful. We have together built unique relationships over the years, and I feel as though I have an extended family of about 100 members. It is said it is the simple moments of human interconnectedness that are the bedrock of our existence, and I am so thankful for the many years of interconnectedness shared with my study participants. The participants tell me they are thankful for all the study has done for them, but it is I that am thankful for all they have done for me.

I have learned so much from this exceptionally loyal and dedicated group, mostly on aging gracefully and the importance of faith and a positive attitude.

It has been quite a colorful journey these past 27 years for which I will be forever grateful to have been an active participant.Thank you DPP/DPPOS!!

Pamela

Participant

Washington, DC

“Historically, it has been difficult to get African Americans to participate in any research study. I realized if I don’t participate, scientists won’t have the critical data they need."

Pamela, a 72-year-old communications specialist who lives in the Washington, D.C., area and has written for both Reader’s Digest and McCall’s Magazine, had always lived an active lifestyle, having been an avid runner and even a member of a ski team. It’s not surprising she takes her health seriously since her mother, who had type 1 diabetes, always taught Pamela and her five siblings from a young age to value their health and made sure they recognized the importance of maintaining a healthy lifestyle. So, in the summer of 1997 when Pamela received a postcard in the mail that invited her to be tested to see if she qualified for participation in a new research study on possible ways to delay or prevent the development of type 2 diabetes, she jumped at the chance. “I went in, got tested, and found out I had prediabetes, which qualified me for the study … so I signed up right away.” She was randomized to the Diabetes Prevention Program (DPP) lifestyle intervention group on October 1, 1997, and so her journey of participating in a clinical trial began.

After several months of diet and exercise with support from DPP clinicians, Pamela achieved her initial goals and even surpassed her 7 percent weight-loss target. She does admit, though, that it was not always easy. In the beginning, she did not quite care for documenting everything she ate, though she appreciated the study coordinators. As she puts it, “I was judging myself … but the study coordinators had no judgment. They were data-driven and incredibly supportive and encouraging to all of the participants.” She says the intervention changed the way she approached her daily activities—it forced her to pay close attention to exercise consistency, portion sizes, and reading nutrition labels.

After those initial months of the lifestyle intervention, the good results for Pamela just kept coming. She put in the effort and learned that, with the support of her DPP doctor and study coordinators, she had the power to change the course of disease. Part of that support included the fact that the DPP team organized group events, such as holiday dinners and baseball games, so that participants could meet and inspire each other. The study team even encouraged them to bring along friends, which turned out to be helpful to Pamela. “If I bring a friend to an outing, maybe the next day I recruit them for a run. It’s easier to exercise with a friend.”

Soon after the DPP came to an end, and the DPPOS was beginning, Pamela knew she would remain a participant. She had worked hard and had seen the fruits of her labor—losing weight and preventing her prediabetes from progressing to type 2 diabetes—but that wasn’t the only reason. She was also motivated by her mother’s fight with her illness, and she realized the significance of her participation in clinical research. “Historically,” she says, “it has been difficult to get African Americans to participate in any research study. I realized if I don’t participate, scientists won’t have the critical data they need…. Diseases manifest differently in different races and sexes … it’s so important.”

Beyond the recommended goals of weight loss and exercise, Pamela also noticed the DPP lifestyle program provided her with other health benefits like better stress management. Life has a way of handing you challenges, and it certainly did for Pamela. Throughout her years in DPP, she drove her mother to medical appointments because her job afforded her more flexibility than her siblings, and she helped her mother deal with many of the complications common to both major forms of diabetes. In 2002, Pamela’s region was rocked by a frightening development—a sniper began terrorizing the area at random. This effectively halted her outdoor runs. And, in 2008 the economic recession hit, which negatively impacted Pamela’s consulting job as a writer. But she looked to the knowledge she had gained about lifestyle change from being a DPP participant and was able to minimize her stress through breathing techniques, in addition to keeping her diet and exercise routine as healthy as possible when each change in circumstances arose.

Pamela has now been a participant in DPP/DPPOS for more than 23 years, a remarkable contribution to scientific research—and also to her own health. Today, not only has she prevented the development of type 2 diabetes, but she no longer has prediabetes and has achieved and maintained an impressive 12 percent weight loss—a testament to her incredible dedication to maintaining a healthy lifestyle as a DPP/DPPOS participant. When discussing her appreciation and respect for the DPP doctors and nurses, she goes so far as to say if she had to do it all over again, she would choose a career in science or medicine. “This is one of the best things to ever happen to me, to have had this opportunity to be part of this program…. Self-management is a discipline. It’s not always easy, but it’s something we need to strive for. It’s a journey, and DPP was the catalyst for me.”

Pamela is proud to have contributed to the DPP’s success, and when asked what she would tell someone considering participating in a similar clinical trial she doesn’t hesitate: “I’d tell them to do it! And, I’d even go with them!” Without Pamela and her fellow DPP/DPPOS participants, there might still be no proven way to prevent type 2 diabetes. Thanks to their efforts, a healthier world has become possible.

Thank you to NIDDK for sharing Pamela's story! To read stories from other NIDDK-funded research, visit their website.

Photo and text source: https://www.niddk.nih.gov/health-information/clinical-trials/personal-stories/contributing-type-2-diabetes-prevention-research

Jane Lehmer

Participant

Washington

“I’m just pleased to be able to make a small contribution to this larger research effort.”

Lehmer first began quilting after her retirement in 2017, taking classes with the local guild in Republic, a small town in the Okanagan highlands of Washington, near the Canadian border. She bought a longarm sewing machine, which she kept in the loft of her home.

There are two phases to quilting, a fusion of art and craft. There is the construction of the quilt top, where the intricately designed patterns are sewn, then there is the layering of the top with the batting and backing fabrics.

“I basically draw figures and patterns while sewing the three layers together,” she says. “Some people have computerized machines, but mine is completely hand-guided.”

Lehmer quickly established a small business, moving the longarm into a small quilting cottage on her property, a dedicated space to focus on her craft. She stands as she works, often listening to murder mystery audiobooks.

Standing is important. As a participant in the Diabetes Prevention Program since 1998, Lehmer has prediabetes. “As an adopted child, I had no idea what my genetics were, so to find out that I’m prediabetic was very fortuitous,” she says. In addition to walking her dog and riding her recumbent bicycle, standing by her longarm is a key part of her daily exercise. “I’m just pleased to be able to make a small contribution to this larger research effort.”

To read more of Jane's story and learn about how she created the cover of Diabetes Care Volume 48, visit the October Issue's website.

Photo and text source: https://diabetesjournals.org/care/article/48/10/1649/163433/About-the-Artist-Jane-Lehmer

Sharon Edelstein

Research Team

George Washington University

"When my kids were little we would go on DPP walks together and we all talked about healthy grocery shopping and meal preparation."

Way back in 1993, I was working at UCSD in San Diego. My boss – Dr. Elizabeth Barrett-Connor – was submitting a grant in response to an RFA about diabetes prevention and asked me to help her write the statistical section. Nearly a year later when my family was about to move to the Washington DC area, I started applying for jobs. I interviewed at the George Washington University Biostatistics Center for a biostatistician job on a brand new study… the Diabetes Prevention Program! That grant I had helped write a year earlier! It was meant to be.

I was blessed to work on DPP for more than 30 years – helping design the original protocol, determining the primary outcome, tracking recruitment, retention, and study adherence, monitoring early results, and ultimately working on many many papers emanating from DPP and DPPOS. And what a blessing it's been – the science and practice changing study, the many hundreds of investigators and staff across the country who became not only my colleagues but my friends, and the direct impact DPP has had on me and my family.

When my kids were little we would go on DPP walks together and we all talked about healthy grocery shopping and meal preparation. When my husband and my father were each diagnosed with prediabetes, I sent them to their doctors with the original DPP primary outcome paper, and each of them insisted that they start taking metformin! Since then, my husband has embraced the lifestyle intervention and has lost about 40 pounds, maintaining a very active and healthy lifestyle. My now grown family is still all about DPP – all of them committed to a healthy lifestyle including daily exercise.

As for me, I spent over 30 years working on DPP and DPPOS, mostly focusing on everything related to data. When I retired in March 2025, I became a certified DPP lifestyle instructor and I'm now leading my first cohort of patients – continuing my DPP story from a whole new direction!! I've totally come full circle and for that I am forever grateful. Lastly, I am most appreciative to the nearly 4000 participants from across the country who literally have given their lives to be a part of this study. You are the true blessing.

~ Sharon Edelstein, DPPer 1994-2025