Phil Shaw is the general manager for the Juvenile Diabetes Cure Alliance. The JDCA’s mission is to direct donor contributions to the charitable organizations that most effectively fund research with the goal of delivering a type 1 practical cure by 2025.
We asked Phil some questions to learn more about JDCA, its mission, and what the organization means by a practical cure.
What is the JDCA and what does it do?
The Juvenile Diabetes Cure Alliance’s primary function is to serve as an advocate for type 1 diabetes donors. We work to ensure that donor priorities are also the priorities of the charities to which they write donation checks or participate in fundraising walks, rides, and galas.
The situation we see today is that there appears to be a disconnect between donor wishes when giving and how the money is actually being used. Our surveys show that 87 percent of donors want their donation to go to research which may deliver a practical cure within the next 15 years. However, the majority of medical research toward a cure for type 1 diabetes is currently applied toward pathways that are more likely to deliver results to a future generation rather than the one living with type 1 today.
Our view is that “someday” isn’t soon enough. If you or a loved one has type 1 now and you give to a type 1 charity, you should have a reasonable expectation of seeing a cure within your lifetime and an idea of when that might happen. We are the only organization that we know of who is solely focused on ensuring that the research paths that have the potential to deliver a cure in the next 15 years are fully funded and fully resourced.
Toward this aim, we do the things advocacy groups do. We conduct research and analysis, write reports, educate donors, and provide advice for larger donors in structuring gifts.
Q: How did you get involved with the JDCA?
I spent most of my career working in executive positions in large packaged foods companies. I began doing pro-bono marketing and leadership development work for charitable organizations with the intent to give back a little of what I had learned after many years in business. The work was immensely gratifying and, through that, I found my way to leading the JDCA.
What initially drew me to the JDCA was the resolve of the organization to bring solutions to people living with type 1 diabetes today. One situation I faced many times in my business career was colleagues saying that "we don’t have enough time to do the job." What continues to surprise me is how, in those situations, we were able to solve that problem by bringing to it a few key things: focus; clear articulation of the problem or challenge; alignment of objective; and, perhaps most importantly, application of the right talent and resources. This parallels our approach at the JDCA.
Q: JDCA has the goal to find a practical cure for type 1 before 2025. Tell us first, what do you mean by “practical cure?”
I want to mention a few things here: first, the practical cure is defined in common rather than medical language. We arrived at the language we use to describe a practical cure by talking with many, many people who have type 1 diabetes and their families.
Second, a practical cure would free a person with type 1 diabetes from all aspects of dealing with the disease on a daily basis. More than a treatment regimen, it would dramatically scale back the involvement needed to manage the disease and enable people with diabetes and caregivers to live a nearly normal life. The characteristics of a practical cure include no more need for daily insulin monitoring, free diet, elimination of lows during sleep, and stable A1c levels.
Third, the definition is broad on purpose. Any medical science solution that delivers against the practical cure is welcome.
Finally, an essential aspect of practical cure research is that it has potential to be in market by 2025. If a research pathway does not have this potential, it is not a practical cure.
Q: Why should we prioritize a practical cure?
We should prioritize practical cure research initiatives because they are the ones with the best chance to deliver life-changing results to people living with type 1 today. A cure available only for a future generation is not good enough.
Q: How is JDCA working to meet this goal?
We provide two basic services to the community:
1) We publish a series of analytical reports and publications on a variety of topics related to practical cure progress;
2) We work with donors to steer what has amounted to millions of dollars of restricted gifts with the express purpose of achieving a practical cure.
Q: What has you excited right now in the diabetes world?
Never before in history has science progressed as far as it is today. While there is no indication on the horizon of a perfect cure and reversal of type 1 diabetes, there are a number of pathways toward a practical cure which hold promise.
However—and this is a big however—practical cure projects remain underfunded and under-resourced. Today, only two cents out of every donated dollar to type 1 diabetes charities makes its way to practical cure research. We collectively need to change this, which you can do by requiring your donation to be used for practical cure research.