Cure Research Remains the Primary Reason People Participate in T1D Fundraising Walks
September 25, 2019
Agree/Disagree: “The Majority/Most of the Money Raised at Fundraising Walks Should Be Used for Cure Research.”
The primary purpose of this survey is to identify the main reasons people in the T1D community participate in JDRF or ADA diabetes fundraising walks. The leading finding, as illustrated in the opening image, is that walk participants want the money they raise to be used for T1D cure research above all else. This finding is the same as prior years and leaves little room for ambiguity.
All survey respondents participated in JDRF or ADA fundraising walks in the United States. There are five additional findings shared below:
1. Walk Participants Want "All" or "The Majority" of Walk Proceeds Used for Cure Research
The survey asked two key questions to understand how walkers want and expect the money raised at fundraising events to be used. The first question asked if the majority of the money raised should be used for cure research and the second question asked if 100 percent of the money raised should be used for cure research.
96% of walkers surveyed said that they want the majority of funds raised at walks to be used for cure research. This expectation is nearly unanimous.
78% of walkers surveyed said 100 percent of the money raised at fundraising walks should be used for cure research. Said differently, 4/5 walkers want ALL of the walk proceeds to be used for cure research.
2. Yet, Only a Small Fraction of the Money Raised by T1D Walks is Actually Used for Cure Research
Donor fundraising events are the primary source of funding for the ADA and JDRF. Nearly 3/4 of JDRF annual income and 2/3 of ADA annual income is raised during fundraising events.
Given the survey results, it is no surprise that the main marketing and advertising messages used to encourage people to walk is a promise that the proceeds will be used to help find a cure. Any other message would likely yield less fundraising. During 2019, 97 percent of JDRF and 100 percent of ADA advertising promised to use the money generated from fundraising events to find a cure for T1D. Consequently, donors expect that the funding will be used for cure research.
Yet, actual research spending remains far lower than the advertising would imply. Only 37 percent ($85m) of JDRF 2019 income and only 2.4 percent ($3.9m) of ADA income was used to fund T1D research of any kind, including prevention, treatment, and cure research. More concerning, cure research is even less. JDRF spent only 7 percent of their total income on cure specific research and the ADA spent less than 1 percent. This information is publicly available in financial records.
3. An Increasing Number of Donors May Stop Giving Altogether
One of the most concerning findings is that more and more donors are indicating that they are less likely to participate in walks going forward. Survey results found that 58 percent of donors say that they are less likely to participate in future fundraising walks once they learn how little of the walk proceeds are actually used to fund cure research.
22% of walkers surveyed said they will stop participating. Up from 17% in 2018.
36% of walkers surveyed said they are less likely to participate in the future. Unchanged form 2018.
The message for the major T1D charities is clear. If they do not actively adjust research and cure research spending to directly align with donor priorities, future fundraising may be at risk—an outcome that is not good for anyone.
4. Donors Want Input On How Their Fundraising Proceeds Are Used
85% of walkers surveyed said that the ADA and JDRF should seek direct input when making research funding decisions. Yet, donors are not represented in any meaningful way in the budget spending decisions at either organization.
This was not always the case. For many years, JDRF was a leader in incorporating the donor voice into research funding decisions via the donor advisory council. However, during the early 2000s, the council was eliminated, and all research funding decisions were consolidated within the executives and board members. There has been no public announcement explaining this decision. As of today, there is no official mechanism for the average donor to directly influence research funding strategy and decision making.
5. Opportunity Cost of Lack of Alignment is Over $130 Million
The JDCA shares the data in this report with the hope that transparency will help to align donor wishes with the actions of the major T1D non-profits.
The dollar cost of this lack of alignment is striking. If JDRF had followed donor's unanimous wish to invest the majority (i.e. 51 percent) of fundraising proceeds into cure research over the past 5 years, the result would have been an increase of over $130 million.
We encourage walkers to take action by speaking up and letting team leaders, walk coordinators, and other JDRF and ADA executives know nothing is more important than cure research.
If you plan on participating in a walk or making a donation we encourage you to stipulate your donation to ensure your charitable gift is used to fund T1D cure research. The JDCA provides a stipulation card to include with any donation to ensure it is used for cure research. (Click here to view the JDCA Stipulation Card).