When she found out her daughter had a different form of diabetes that allowed her to go off insulin, Laurie vowed to get the word out, in the hopes that others could get tested and live without the burden of daily injections and constant monitoring.
Tell us about your background…
I grew up in Indiana and went to Asbury College for my BA in English Literature and Wheaton College for my MA in Communications. I live in Glencoe, Illinois with Mike, my husband of 23 years, our three teenagers, and two golden retrievers.
My professional background is in communications, strategic planning, and public affairs for national non-profit organizations in Washington, DC and Chicago. This includes media relations (educating reporters, producers, and editors about various timely issues, as well as producing news releases, press kits, position papers, and press conferences) and media appearances and interviews with national and local outlets (major networks, C-Span, New York Times, Chicago Tribune, Associated Press, Time, Newsweek, etc.)
I also trained leaders and activists on how to effectively deal with the media and how to design media/public affairs plans to support their political and legislative initiatives. I organized and spoke at press conferences from the National Press Club and the steps of the US Supreme Court in DC to many venues throughout Chicago. I have extensive background in writing and editing policy papers, guest editorials, news releases, monographs, and more.
I have done extensive public speaking throughout the country on a variety of public policy and legal issues. I testified at platform committee hearings for the Republication national conventions.
One of my most thrilling speaking opportunities was a gathering of public policy and political leaders in San Francisco in the late 1980’s. Former Attorney General Ed Meese introduced me and moderated the Q&A after my speech. Economist and Nobel laureate Milton Friedman was in the front row and asked me the first question. It was mind-blowing that a small town girl from the Midwest could be considered an authority!
During my DC days, I cut my political teeth. Although I disliked the Machiavellianism that drove most politics, I learned the importance of coalition building, networking, finding common ground, and doing so with integrity and respect. Some of my best friends, then and now, are those on the opposite side of the political aisle. I learned that building authentic relationships fueled by kindness, honesty, and respect go a long way in working for the common good. The high road is the only road to achieving enduring success.
When I married Mike, at 32, I chose to stop working. With my job requiring me to travel 50 percent of the time, I knew it would be difficult to be a newlywed. My parents were divorced and I knew I didn’t want to go down that road so I wanted to do everything I could to nurture a healthy marriage.
When I left work, I had a huge crash because my identity was connected in a very unhealthy way to my career. This identity crisis forced me to do some deep soul searching about who I am apart from what I achieve.
Since leaving the workplace, I have volunteered to advise and support a number of organizations near and dear to my heart, including the Kovler Diabetes Center at the University of Chicago (I am a Founding Leadership Board member), By the Hand Club for Kids (a Faith-based inner city after-school program for Chicago’s most at-risk kids) and the Guild Board of the Lyric Opera of Chicago.
What is your next act?
I am an advocate raising awareness of monogenic diabetes. Our youngest daughter, Lilly, was diagnosed with diabetes as a newborn during a routine visit to her pediatrician. According to the Centers for Disease Control, more than 25 million Americans (347 million worldwide) suffer with various forms of diabetes. It is a chronic disease in which the body cannot control blood sugars resulting in serious, and sometimes deadly, health consequences including blindness, heart disease, amputation, and kidney disease.
My husband and I were devastated and felt swallowed up by a disease that we knew nothing about. In time, we learned how to prick her tiny heels and test her blood sugar (10-15 times, day and night), monitor her food for carbohydrates and give her insulin shots. Lilly had two night-time seizures when she was four, caused by seriously low blood sugars. I brought her out of them by rubbing Cake Mate frosting on her gums. Life caring for a child with diabetes was a daunting and never-ending job, but eventually it became the new normal.
I scoured the Internet for answers, clues, cures, everything and anything that would help Lilly. And then, in June 2006, our lives changed forever. My husband attended a JDRF meeting where an expert of the University of Chicago Kovler Diabetes Center spoke of an upcoming study in the New England Journal of Medicine involving children diagnosed with diabetes as babies. The doctor explained that most of the children did not actually have type 1 diabetes, but rather a newly understood genetic form that is best treated with oral medication, not insulin shots. Stunning, mind blowing news.
Within days we had Lilly, then 6 ½, take the genetic test—a simple spit in a tube— that would determine if she had this different type of diabetes. It’s a pretty dramatic story but there isn’t enough time here to tell it. Suffice it to say that the rest is history. Lilly’s diagnosis was changed to “monogenic diabetes.”
We experienced the gradual unfolding of a miracle as she transitioned over the course of 10 days from insulin to taking pills. It was incredible to watch Lilly disconnect her insulin pump for the last time and absolutely surreal when she handed me her lifeline to store in a closet. The experience was as overwhelmingly joyful as her initial diagnosis had been devastating.
Lilly is now 15 and has been off insulin for 8 years, with perfectly normal blood sugars and no side effects from the twice-a-day oral medication. She will take medicine for the rest of her life and, like everyone else, needs to maintain a healthy diet and lifestyle. She no longer needs to count carbohydrates or test her blood sugar constantly, and is no longer at risk of the devastating complications that come with insulin and uncontrollable sugar levels in her blood.
After Lilly went off insulin, we soon learned that hundreds of thousands of Americans like Lilly have the wrong diabetes diagnosis. Although monogenic diabetes is less common than either types 1 or 2, there are as many as a half million people in the US taking insulin unnecessarily. With genetic testing and a correct diagnosis, many others could have this life-changing new treatment. I was amazed by this statistic and more amazed that people weren’t finding out about a historic breakthrough that could change their lives. Someone had to tell them by throwing them a lifeline of information. Unfortunately it wasn’t coming from the medical community.
We were grateful that our daughter was free from insulin shots, but wondered “why us, why now?” Our conclusion was that we were supposed to tell our story and bring hope to others. With my background, I knew what to do.
We started monogenicdiabetes.org, an authoritative website now administered by the Kovler Diabetes Center. I also began, and moderate, an online discussion/support group for parents whose children were also able to switch their treatment from insulin shots to oral medication. Our close-knit group grew as parents contacted me after hearing our story, eventually meeting in person in 2010 and 2013 at “Celebrating the Miracles” conferences hosted by the Kovler Diabetes Center to bring scientists and families together.
In 2009, Lilly’s Law was established. It requires Illinois physicians to register all children with diabetes onset before 12 months of age with the state’s Department of Public Health. It is a pilot program to advance the understanding of the genetic cause of diabetes.
The capstone of this next act includes serving as executive producer and co-writer of the documentary Journey to a Miracle: Freedom from Insulin, a 5-year project which was first broadcast by WTTW-11 Chicago in January 2015, and will be broadcast again this summer and fall. We have submitted the movie to film festivals around the world and the film will be available to other PBS markets throughout 2015. It will soon be available on DVD.
Tell us more about this documentary…
Journey to a Miracle: Freedom from Insulin tells of a breathtaking cure for diabetes and the lives that were changed forever.
It’s a rich story about scientific perseverance that has taken decades to write. Through painstaking research, collaboration, and heart, an international team of scientists assembled pieces and eventually solved an intricate diabetes puzzle. They confirmed what they had long suspected: There are genetic forms of diabetes that are different from either type 1 or type 2. These newly understood forms are called “monogenic diabetes” and the best way to treat many of them is not with insulin.
Up to 95 percent of people with monogenic diabetes are misdiagnosed. This is because neither they nor their medical providers are even aware of the possibility of another diagnosis and treatment. With the right diagnosis—using genetic testing—many people can radically change their diabetes treatment. Rather than insulin shots, they can be successfully treated with an inexpensive and commonly used diabetes drug, a sulfonylurea. It allows the body to make and secrete its own insulin.
The discovery of monogenic diabetes made medical history but, more importantly, it created a life-changing miracle for those who have been able to break free from insulin dependence.
The film weaves together the lives and stories of scientists and grateful families who hoped and prayed for a diabetes cure, but never in their wildest dreams imagined it would come in the form of a simple pill. It is a heartwarming story that blends science and humanity with authenticity. And it’s a journey everyone is calling “a miracle.”
Our goal is to raise awareness of monogenic diabetes and reach as many people as possible. Since most are not learning about the possibility of genetic testing and a different diabetes diagnosis from their doctors, a grassroots outreach seemed logical. Through television broadcasts, film festivals, and the DVD, we hope to directly reach people who can be helped.
How did you make the movie? What challenges did you encounter?
We knew we were supposed to make this movie but had to take a deep breath before we took the plunge. I had an extensive background in various communications mediums, but not script writing or film production. It was an enormous undertaking to conceptualize, research, write, cast, plan, film, edit, produce, distribute, and promote the film.
Mike and I are executive producers and I guess you could say that I am the glue of the project and coordinated every aspect of the movie except the technical pieces. Rabbi Allen Secher, who married Mike and me, introduced us to the talented Ted Kay of TMK Productions in Northfield, IL. Allen and Ted had produced a powerful Emmy award-winning documentary a few years before. When Allen heard our story, he knew he had to connect us.
I co-wrote the script with Ted Kay, and his fabulous editor, Larissa Woodward, did all the film edits. A small but mighty team.
To fund the movie’s production, I approached Quest Diagnostics to be our sponsor. We are very grateful for their support. The Jaffe family has underwritten all the marketing and post-production costs. This movie certainly isn’t a money-making venture. PBS stations air the movie for free. The only income stream will be DVD sales—any proceeds will go to diabetes research.
The research and writing were particularly challenging because we presented the history of a very complex scientific discovery that spanned decades and crisscrossed the globe. We were diligent about making sure that our layman’s interpretation of the science and facts were correct since ours was to become an authoritative documentary on the subject of monogenic diabetes. Ironically, in one of my previous positions, I had to do the same thing by translating legal jargon and issues into lay terms.
Another challenge was to both be true to science and history while weaving together the human aspects of the story in a compelling and heartwarming way. It was tricky to achieve the right balance between science and emotion.
Finally, it was challenging to assemble all the pieces of a complex decades-long story into a 57-minute format. We had to be strategic and clarify our mission before we could even begin to outline a script.
Were there times when you thought about giving up?
Only once, when a certain well-known actress bailed the week that we were to shoot her host/narration scenes in New York. Don’t want to bring bad energy by talking too much about it, but it was a blow. But things happen for a reason, and always for good. We persevered, God opened another window and we made a much better, more powerful movie.
How supportive was your family? How has Lilly reacted to all the attention garnered by her story?
I’ve always been a dreamer, a really BIG dreamer. And that sense of “destiny” has always propelled me. My parents believed in me, but proclamations of my next – always BIG – acts generally were met with subtle eye-rolling and amusement. But then, I actually did what I said I was going to do. This time (when we announced that we were doing a movie), they believed me.
Everyone was wonderfully supportive, sitting through interviews and watching many rough cuts. The movie is definitely our family’s achievement, not just Mike and mine.
I really admire that Lilly does not want to be defined by her diabetes, but is enthusiastic about finding others who could also be helped by the breakthrough. She is an amazing young woman and is becoming an articulate spokesperson in her own right. She served on the Q&A discussion panel with me at the documentary premiere.
What did you learn about yourself through this process?
I really love people and thrive on helping to empower and enhance others’ lives.
What words of advice do you have for women seeking to reinvent themselves in midlife?
Step outside your comfort zone. Educate yourself, network and consult with others in the field, and don’t be intimidated by your age and/or lack of expertise. But always double-check your work before you present it.
You are stronger and more qualified than you think! By middle age, women have met challenges on so many fronts. That life experience is an enormous asset.
Trust your intuition. Try to believe the best, but honor that inner voice when things just don’t feel right.
Surround yourself with people who are authentic, believe in you, and support your dreams. Tune out the naysayers, toxic and envious.
If you stepped away from a career to focus on raising children, stand tall and be proud. Don’t let anyone marginalize or diminish the importance of motherhood. It’s one of the most important marks you will ever make on the world.
For women of faith: Meditate and pray for wisdom, courage, and guidance.
What resources do you recommend for those interested in learning more about diabetes and monogenic diabetes?
What about for women reinventing themselves in midlife?
The Paradox of Generosity: Giving We Receive, Grasping We Lose by Christian Smith
Give and Take: Why Helping Others Drives Our Success by Adam Grant
Crazy Busy by Edward M. Hallowell
The Elements of Style, Fourth Edition by Strunk and White
What’s next for you? Do you think you have another next act in your future
From the time I was a little girl, I felt a strong sense of destiny—that God had big plans for my life. I dreamed of being an actress, but parental disapproval halted that plan, so I pursued a different career path. I have no regrets; I have learned to never look back. I have realized that “destiny” is an ongoing process, not an arrival point and certainly not linear. My sense of calling has zigzagged so much over the years. At every turn, I would tell myself “Oh, this is what I have been preparing to do…”
Now I realize that experience builds on experience, and that the collective body of life’s work prepares you for the next leg of the journey. I embrace the belief that “the best is yet to come” and that’s very exciting. I will always be a girl on a mission!
Contact Laurie Ramsey Jaffe at Lauriejaf@gmail.com