With Father's Day just a couple of days away (hint, hint!), we thought it would be cool to hear from a dad who's involved with diabetes on many levels.
Pete Miselis is a D-dad who's stepped up his advocacy into a professional role, working for a relatively new organization aiming to act as a watchdog for people making donations to various organizations pursuing a cure for type 1 -- the Juvenile Diabetes Cure Alliance (JDCA), which we've featured here before. Pete's now director of research analysis at this New York-based outfit.
Notably, this organization trumpets the push for a "Practical Cure," which would include something along the lines of minimal glucose monitoring no more than once a week, keeping A1C levels between 5 and 7%, not restricting a person's diet or requiring them to carb count, no complication medications, little side effects, and worry-free sleep. This kind of "cure" should be obtainable by 2025, the JDCA believes.
That's what Pete is after, both in his professional role and as the father of two young-adult children with type 1 diabetes.
Today, Pete shares his family's story and what he finds so appealing and important about the JDCA:
When my daughter landed in the hospital as an infant, her mother and I were horrified. After a few panic-stricken hours the doctor gave us the news: she had type 1 diabetes. I remember how tightly I held my wife's hand when we found out that current treatments would never be able to make her well — just help her cope with the condition that would be with her the rest of her life.
When we learned that type 1 diabetes could have a genetic component, we were concerned about what it might mean for her two brothers and had them tested for antibodies. The test results came back positive for our eldest son, who was 5 at the time. All too soon, he transitioned to full-blown type 1 at the age of 10. We were determined to get a handle on the disease, but we knew that our lives would then be far more chaotic managing the constant up and down of blood sugars for two young children.
Coming to terms with our children's diagnoses and the daily routine was an arduous process, and the long-term prognosis was difficult to swallow. There were new routines, schedules and procedures just to keep them alive. Not to mention ensuring that our other son didn't feel left out by the added attention we needed to give to his brother and sister.
Through education, meeting other parents of children with diabetes and the passage of time, we were better able to cope with the "new normal." As they grew older, I became concerned about the long term. Then a researcher for investment companies, I dove headfirst into learning whatever I could about the prospects for a cure during their lifetime.
As a donor, I began to have concerns that my contributions were not being used for funding cure research. There is no easy way for the average donor to determine whether his or her walkathon donation or major gift would have an impact on themselves or their children. That's why the Juvenile Diabetes Cure Alliance and its concept of a Practical Cure made so much sense to me. Instead of being frustrated at the lack of measurable progress toward a cure, the JDCA renewed my hope that people with type 1 can live normally with the disease in the near future — as long as diabetes charities and researchers make Practical Cure research a funding priority.
My evolution from the for-profit sector to my current position as the JDCA's Director of Research Analysis was a natural one. Most of our five-person full-time staff has been affected by diabetes, and we have a strong business background. The dedication and drive that we bring from the for-profit world is magnified by both our respective connections to diabetes and a goal-oriented way of thinking that serves us well in analyzing the operations of the charities and advocating for Practical Cure research.
Now a two-year veteran of the JDCA, I talk frequently about type 1 issues with two of our earliest and most ardent supporters: my two children who have type 1. They came to the JDCA on their own (after all, not every young adult is enthusiastic about what their father does for a living). They champion a Practical Cure, simply because any research or outcome that would result in them living a like-normal lifestyle would be a revolutionary change for them and for our family.
While officiallya researcher of the type 1 charities, my duties go far beyond examining the major nonprofits. I spend time attending conferences, speaking with PWDs and their parents, engaging with researchers and conferring with donors.
One of the things I enjoy about the JDCA is the healthy dialogue about what's best for those with diabetes, whether they've had the disease for five months, five years or 50 years. Some are thrilled with the work we're doing, and some are on the fence when it comes to our ambitious goals. Nonetheless, our mission invites a healthy discussion, and most people see tremendous value in the product we deliver to the donor community and to cure development. Both the JDCA's founder and my colleagues can't help our unbridled sense of ambition and enthusiasm. When developed, a Practical Cure will completely change my life, as well as the lives of everyone affected by type 1.
The JDCA's mission is to work with donors and help direct their charitable donations to the organizations that fund Practical Cure research. In so doing, we increase the chances of meeting the very challenging goal of delivering a Practical Cure by 2025. We need to fund the right projects and take an organized, systematic approach to what can be a haphazard funding process. Our target date of 2025 is as much a rallying point for the research community as it is for the public. We need to keep the research industry focused.
I can't help but draw parallels to the sense of urgency that I felt after my daughter was diagnosed. At the time I was lost, but it's my hope that with the resources the JDCA provides, donors and families will never have to feel alone or be without a voice in the diabetes research community. A donor can request that their donation be directed to Practical Cure work — research that is near-term and could make managing diabetes a miniscule task. I believe that we can overcome type 1 with an approach to cure research that strictly focuses on practical outcomes, forever ending the moment of panic at diagnosis.
Since the early days, the JDCA has moved from crawl to walk and we are just now starting to really pick up our stride. As with many start-up organizations built from a compelling vision, we have become more professional, focused and committed to making genuine change. Our ultimate goal of representing donors who want a cure is unaltered. After listening to the voice of donors and those living with type 1 for more than two years, we're now doubling down to prioritize Practical Cure research and direct funds towards projects working toward that goal.
Thanks for your hard work and passion, Pete! A dad to be proud of...
And don't forget about our other featured D-Dad this week, author Scott Benner. Be sure to check out his guest post and leave a comment by 5pm PST / 8pm EST tonight for a chance to win a copy of his new book, Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home-Dad.