As we have often said at the JDCA, one of the most important aspect of the diabetes community, if not the most important, is the diabetes donors. The diabetes foundations, such as the JDRF, ADA, DRIF and Joslin, would not be able to function without all the donation money they receive. Simply put, the donors are the stakeholders of such organizations, and as such should be aware of how the nonprofits are using their money.
Donating should not be as simple as writing a check or participating in an event, when you are giving without asking for anything in return. Instead you should see that your contribution makes a difference by going toward research that you believe will make a difference.
As many of our reports and surveys have concluded, the main reason people give money is for a cure, which is reflected in the names and slogans of many of the various diabetes fundraisers.
It is not enough, however, to hope and trust that the way the money is spent will match this desire for a cure. Participating as a community at a large fundraiser brings a lot of positive energy, and people are eager to rest with the belief that their contributions have made a difference. But we need to do more to make sure that those efforts are not wasted and are used to actually advance the search for a cure.
At the JDCA, we are working to empower donors and give them the tools to make their intentions heard. We realize that it can be difficult to reach out to the top levels of management at these foundations and let them know how you really feel and how you want that money to be used.
It is the commitment and dedication of the diabetes community that makes us at the JDCA very positive about the possibility of developing a cure within our lifetime. We see that potential very clearly– but we also see that we need to put in a lot of work to make sure that the fruits of donors’ labors are not wasted. Only a small portion of donor money actually goes into the research labs (and even less into research work with a set definition of a cure and timetable for achieving one), and that is the main thing in the diabetes non-profit industry that we need to change.
A cure for type 1 will not come unless we demand to see this change. We need a united type 1 donor community to make our voices heard so that the charitable organizations create focus and progress.
– Stoyan
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