The Joy of Collaborating
Last month I spoke about fundraising at the RARE Advocacy Summit in San Diego. The event, put on by Global Genes, is one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies.
I can’t stop thinking about how impressed I was by the event and the people who attended. Why? Read on…
First, given the gravity of the rare diseases represented at the event and the fact that many attendees have been personally affected by them, I anticipated encountering a crowd exuding sadness and pain. I couldn’t have been more wrong. In fact, this group of several hundred attendees were cheerful, motivated, and proud. Most had something to do with a nonprofit that was working to find a cure for a particular disease, and many dealt with the management of these diseases (emotional and physical).
Before I go on, I want to share some stats about the rare disease world:
There are over 10,000 rare diseases that have been identified to date, of which only 5% have an FDA-approved treatment.
Rare diseases impact over 300 million people in the world, and 70% of them start in childhood. In the US, one in ten people are living with a rare disease, and half of them are children.
Of those 10,000 diseases, about 80% have a genetic component.
The average amount of time it takes for a rare disease patient to receive an accurate diagnosis is 4.8 years.
Three in ten children with a rare disease won’t live past age five.
Talk about purpose and passion — these folks don’t need to do any conjuring to make an authentic pitch. For many of them, their organization’s mission is a major part of their daily lives. These people are laser-focused on finding a cure and helping those suffering from the disease they’re working on.
As I walked the halls and spoke at a roundtable, I was struck by the various conversations I heard. As far as I could tell, there was zero negative talk. The talk was 100% genuine and “from the heart”, and these leaders wanted to do whatever was necessary to achieve their mission.
I loved that. But I loved (and noticed) something else.
They were sharing information. They were collaborating. They were excited to learn. Most importantly, they embraced the prospect of changing the way they did things, if it might get them to their goal faster.
That sounds so logical, doesn’t it? I agree, but the truth is that many, if not most nonprofits see collaboration as a threat. Sharing resources and vendors? Not likely. Sharing donor information? Heavens, no. Being honest about events that worked as well as events that netted next to nothing? No way. (Most organizations won’t even admit to themselves that the numbers didn’t warrant the event.)
I know of organizations that “cordon off” entire months of the year, telling others (internally or externally) that they “own” that month, and that no solicitations can go out in that month that might compete with their own. So they’re suggesting that donors won’t go to/sponsor their events if they have options to choose from? This feels like another version of the “donors are stupid” argument. Wow.
Not all nonprofits work that way. In the past, I’ve used this platform to celebrate organizations that “bucked the system” and worked collaboratively — or in some way acted for the greater good, even if that wasn’t going to directly help their own nonprofit. I’ve done this because actions like that are so uncommon. (Read here and here for a few examples.)
One of my favorite stories happened during covid, when the head of an animal shelter asked her donors to not give to her organization, as she felt that her dogs were fine and she would be able to care for them for a while without additional funding. Instead, she asked (via social media, her website, etc.) that donors give to local food banks and social service organizations — groups that she felt had a greater/more immediate need. Guess what happened? Donors were so shocked by her deferral and honest, caring request that many gave money to the local food banks and also sent money to her.
My dear friend and colleague Kassie Kissinger Cosgrove (CFRE and Senior Development Office at Loyola New Orleans) put it very succinctly. She says “fundraising is not a competition!” Can you have a long-term, authentic, mutual relationship with a donor if you act like you’re in an ongoing competition for donors and money? No. Collaborating, listening, learning, caring and sharing are the stuff of relationships. Game playing, withholding information, or ignoring the benefits of collaborating with others is short-sighted, and donors won’t put up with those tactics for long. Combining passion, purpose, honesty and a willingness to learn from others is the approach that will ensure long-term relationships and long-term giving.
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Lisa