With so many fledgling or small non-profits and charitable organizations cropping up in our Diabetes Community (and across the broader healthcare scene), many are eager for any help they can get in securing funding to "keep the lights on" and programs running.
There are some organizations out there set up to do just this: assist new non-profits in getting the baseline funding they need. But just like everything else in life, it's not perfect. You sometimes run into folks trying to capitalize on charitable intentions through less-than-comforting practices that may even take advantage of people.
We learned about one recent situation in our own D-Community that highlights the dangers of these relationships, and underscores the need for everyone to be mindful of the deals they're making, and read the fine-print.
Last week, we received an email notification from the long-established non-profit group Insulin Pumpers, which began in September 1997 and is run by California D-Dad Michael Robinton, whose daughter Lily was diagnosed at age 11 and is now in her 30s. And of course, she's an insulin pumper! (now on the t:slim)
The D-Community owes a lot to Insulin Pumpers, which much like Children With Diabetes (started two years earlier) stands out as forefathers to what most of us know now as the DOC; they were both instrumental in shaping our community through the years, providing valuable resources and changing the game when it comes to sharing information about diabetes devices and issues online.
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Insulin Pumpers stared out with 12 members and has since grown to more than 6,400 individuals and families. It's run by a team of volunteer writers, web developers, mail administrators, chat moderators, and medical advisory members scattered throughout the world. And as much as the group's become a staple of our world of "free" online diabetes discussion, the group is a non-profit and needs to raise money in order to help pay rent, utilities, Internet access charges and other expenses.
That is what brings us to today's cautionary tale: last week we learned that Insulin Pumpers recently fell into a trap that caused it to lose an uncomfortable sum of money.
We don't want this to happen to anyone else.
The deal is that last summer, Insulin Pumpers entered into an agreement with a British Columbia-based IT consulting company called Metasoft Systems, which runs programs called Foundation Search and Big OnLine database tools that are supposed to help charitable organizations raise money. The cost for access to these archives came out to nearly $4,600, with the promise that the group could recoup its costs in fundraising, and Michael signed a contract with that understanding. Michael says the services did help identify more than 400 potential donors, but few groups bothered to respond to proposals, and those that did turned the diabetes group down. So, after seeing results of "zilch" for seven months, Michael requested a refund according to the company's money-back guarantee...
Here's where it gets a little dicey.
Apparently, Michael learned that he hadn't followed the express written requirements to get his money back. In the contract is a provision stating that you have to schedule and complete an initial consultation within the first six weeks. That's totally separate from the other free orientation webinars, customer service contacts through email, and the handful of other communications Metasoft offered during the latter half of 2013.
While "initial consultation" and "orientation webinar" may not seem different, they are by definition of the contract. So, Metasoft declined to refund the money Insulin Pumpers put down, on the basis that they didn't follow the rules.
"What irritates me the most about the whole situation is it feels like this was orchestrated on their part," Michael wrote to us in an email. "I'm pretty careful about this kind of thing because I know that it's generally set up to help you fail, so if there is an issue, the other side can wiggle out. Apparently I fell into their trap."
Michael says the nearly $4,600 is a good chunk of money in the context of the total $68,000 his group raised last year, especially given the dimmer fundraising prospects for this year -- since many pharma companies are hurting due to Medicare competitive-bidding changes that started hitting last summer. With more than half of their total budget spent on staffing, overhead and taxes, Michael says this loss is a big deal.
"If there was even ONE response from the letters and grant requests, it would have paid off," he said. "But that simply didn't happen. Rather than wasting more time chasing this, I'd rather put my energies toward helping people and hopefully raising some money from other avenues."
We reached out to the Metasoft to find out a little more about their company practices, but didn't hear back immediately.
** 3/11 UPDATE: After our post was published, we received an email response from Metasoft's Member Support Supervisor Mitch Owens, who said that the company "believes that our Money Back Guarantee is a very generous offer, and we do honor it by providing full refunds to clients who meet the conditions of the guarantee. Those conditions were not met in this case, so no refund will be issued. The guarantee is no longer valid and no refund will be issued because, as your article correctly states, Mr. Robinton did not follow the express written requirements of the guarantee he signed in his capacity as president of Insulin Pumpers.
Owens also added, "This being said, Metasoft Systems stands by its commitment to provide its members with support and training to assist them in their use of our services. Our hope is that this matter will be resolved before these or further actions by Mr. Robinton lead to detrimental consequences for the worthwhile organization he represents."
This whole situation is, well... unfortunate. No other word for it. I've been a long-time fan of Insulin Pumpers, and way back in my post-high school and early college years, I was a subscriber who followed their listserv mailings closely -- especially around 2001, when I was investigating insulin pumping for the first time. I finally decided to start on a pump during my last year of college. Through the years, I've often found myself drifting back to the conversations or catching interest in a particular topic.
The fact that this impacts Insulin Pumpers makes my heart hurt, but it also worries me that other great diabetes advocates or organizations could fall into the same kind of situation and be caught off-guard. As we reported recently here at the 'Mine, there are a lot of new and emerging non-profits and fundraising groups in our Diabetes Community. So these money-raising databases and businesses may be on many different radars. We're hoping that by sharing this cautionary tale, others will hopefully be a little more aware of the potential risks.
There are a few old adages that we should all keep in mind in these types of situations: Get everything in writing, Always know what you're signing, and Be sure to read the fine print. Sometimes it's easier said than done, but especially important when you're putting charitable donations on the line.