Friday, July 31, 2009

Is JDRF A Donor-Centric Organization?

Back in December 2006, JDRF published an interview that Kelly Close conducted with the organization's then-incoming Chief Executive Officer (CEO) Arnold W. Donald. (That interview can be downloaded here.)

I recently re-read that interview because I recalled Mr. Donald making some statements about how he felt that JDRF needed to become more a "donor-centric" organization, and I was looking for the quote. I was also comparing Mr. Donald's view and trying to understand how the new CEO, Alan Lewis will address this issue. I found the quote from former CEO Arnold Donald, and have provided an excerpt from that interview below:

Interview with JDRF CEO Arnold W. Donald, Publish Date: December 2006

KC: Where do you think there is the most potential for improvement in the [JDRF] organization?

AD: Wow. The most potential. I haven't [ranked] it that way ... I come from a continuous improvement orientation, and I see improvement opportunities everywhere. I don't care how good something ism you can always improve, but I would say first and foremost is our ability to live our intent of being donor-centric.

KC: How do you mean?

AD: Every donor or volunteer should feel that they are totally connected to JDRF. They should feel they are proactively communicated with. That their connection to type 1 is understood by JDRF. They should be treated with integrity and caring and know that their opinions count. It doesn't mean we are always going to do exactly what a given volunteer's opinion is, but if they understand why we've done something, even if they would do it differently, it creates the basis of alignment.

KC: Right. But how do you get everyone on the same page?

AD: It requires a lot of components. Number one, it requires orientation of behavior by all of the staff. It requires certain technology, databases, information systems, and what not, that we're working on and we've had some issues with and we're organizing around trying to address. If you don't feel like it's a donor-centric organization when you get the same letter three or four different times, or your name comes and is misspelled, or it comes and it's referencing a child that's not yours, then that's a problem. So having the right information in databases is important.

KC: That counts.

AD. These are little things, but they are symptoms of a more core issue of being truly best in class of being donor-centric. For example, we have tons of communication. I couldn't tell you all the different communications we have. Having said that, I can't tell you how many times I've been told by volunteers, donors, and staff that they don't feel communicated with. So therefore, in that mix somewhere we don't quite have it right, and communication is everything. So we're going to have a difficult time being truly donor-centric of people don't feel like we're communicating effectively with them.

A few months later, in the 2006 State of the Foundation Address, Mr. Donald again spoke about the efforts the organization was making to build it's donor pipeline, especially with it's high-net worth cultivation and stewardship strategy. In his address, Mr. Donald made the following statement:

"We've determined that our donors want information on research that is clear, concise, and targeted to their interests. Information that shows milestones and outcomes on their investment; regular research reports; site visits; and phone conferences with researchers. We're finding that we're engaging both current and prospective donors in an ongoing dialogue that involves them in JDRF's research program in deeper and more committed ways, and motivates them to make new and significant leadership gifts."

Of course, as JDRF's 2008 Annual Report notes that while 2008 was a banner year for JDRF in terms of fundraising and research dollars allocated, the organization expects an extremely tough year in 2009, and is expecting that to continue possibly into 2010.

Now, I certainly do not want to diminish the importance of major donors (who attend some of the organization "galas" to the tune of $500 or $1,000 a plate), and big donors are indeed valuable, but I was curious if everyone in the Diabetes O.C./online donor community feel like JDRF is truly donor-centric, by sharing the latest-and-greatest research news, and presentations with us?

Personally, I've never attended a JDRF gala (frankly, I'm not sure I'd even want to) nor would I spend such an amount to attend a back-tie party, but I have consistently raised a few thousand dollars each year in my walks, yet I get the sense that I'm not a big enough fundraiser to be entitled to get such information. Often, I feel like JDRF is more interested in stupid black-tie parties than in addressing my need to feel like JDRF keeps us as well-informed about different programs the organization funds with the money I help raise.

Case in point: I had to really search out information about Industry Discovery and Development Partnership (IDDP) program and translational research efforts, and most of the information I found came from sources other than JDRF. Is it really so hard to put a Powerpoint presentation on the organization's website? I don't think so.

Well, the great news is that JDRF's New England Chapters (collectively, except for a few chapters in Western Massachusetts and Connecticut) have done an excellent job of addressing this deficit ... with a blog, and that blog has some good stuff you might want to check out. These include presentations, videos, and other information so that anyone can see these things, not a privileged few who managed to attend the original event. Among the items they share is presentation from Todd Zion about the SmartCells program (the bad news: human clinical trials are still quite a way off ... Phase 1a clinical trials are not scheduled to begin until Q2 2010). Also, catch my interview with SmartCells' CEO Todd Zion from back in 2007.

I basically lifted almost all of their content in their update from April 2009, but be sure to catch their archives, too -- they contain some good stuff that should make other JDRF chapters look to replicate! FYI, their blog can be found at, and the specific post I'm referring to can be found here, but also be sure to browse through their archives, too -- there's some good stuff there!

JDRF New England Chapter's Tenth Annual Spring Research Briefing
Wednesday, April 22, 2009

The Tenth Annual Spring Research Briefing was held on Monday, April 6, 2009 at the Boston Marriott Newton. The information shared that night was an inspiration and surely proof that our quest for a cure is closer to reality than ever.

We heard from two excellent presenters: Dr. Alan Lewis, JDRF's new President & CEO, and Dr. Todd Zion, Co-founder, President & CEO of SmartCells, Inc. Dr. Lewis introduced himself to the JDRF family in the New England area and shared his perspective of diabetes research currently and his vision of where JDRF can help expedite progress toward a cure. Dr. Zion focused on research being done on a product being developed at his company, SmartInsulin, a once-a-day, glucose-regulated, injectable formulation for treating diabetes.

Following you'll find video and slides of the evening's presentations, as well as video of the question and answer session with our presenters. A special thank you to Victoria Bergantino, Greg Ford, Geoffrey McLaughlin, and April Watkins of Bentley University (Bentley is my alma mater!), and to their professor, Mark Frydenberg, for making this possible!

Tuesday, April 21, 2009
Dr. Alan Lewis, President & CEO, JDRF

Presentation from Dr. Alan Lewis

Dr. Todd Zion, Co-founder, President & CEO, SmartCells, Inc.
Tuesday, April 21, 2009

Presentation from Dr. Todd Zion

Question and Answer Session

Clinical Trial Initiative

Finally, I should also just include the organization's Clinical Trial Public Service Announcement (PSA) which coincides with a new tool they've added to find type 1 clinical trials.

To find a cure, JDRF needs people with type 1 diabetes to consider participation in human clinical trials of experimental new therapies.

The JDRF Type 1 Diabetes Clinical Trials Connection is here to help people with type 1 diabetes better understand what is involved in participating in a clinical trial, and to simplify the process of finding trials that may be of interest to them or to their family members.

The goal of this service is to serve as a resource on the latest research advances, new research studies, and information about opportunities to participate in clinical trials.

Participating in a clinical trial is an important way for people to help to find a cure for type 1 diabetes and its complications. That's particularly true today, when JDRF's nearly 40 years of research leadership has brought us to the point where scientific advances made in the laboratory are being tested in people.

Clinical Trial PSA (YouTube video):

Conclusion? Some JDRF Chapters Are Donor-Centric, Others Have A Lot of Work to Do

I don't know about all of you, but personally, I'd like to see more of these online initiatives from the JDRF National Organization, not simply an innovative local chapter (I don't have great affinity for the New York City chapter anyway, they've been able to coast for years on their location which enables them to have a walk that raises lots of money on a per capita basis, even though the local chapter is dominated by rich "mommies and daddies" who frankly, don't care much beyond their own social circle, but that's a conversation for another day)!

1 comment:

Bennet said...

I don't think JDRF is remotely User Cetric.

Like you I have spent a lot of time trying to track down information of IDDP. (I meant to talk with you about that in Indy but didn't find the time.) JDRF isn't real proactive about getting information out. I think the IDDP process addresses a key gap in the lab to pharmacy evolution. Hell if it was me I would be pushing good news about it every chance I got.

I wish JDRF was a lot more open about how the money gets spent and a lot more in-tune with the average Joe walker about our visions for JDRF investment.

In our area I get the feeling JDRF staff are not very in tune with T1. Here's an example: We went on a JDRF trip to visit congress. The weather went way bad on the ride home. I had to explain to the JDRF people why they needed to save some snacks in case the trip went way long. They didn't realizes how the NPH some of the kids in the bus were on would require scheduled eating.

We did JDRF walks but came to the feeling that our efforts were better directed in other areas.