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Fundraising in the Time of COVID-19

June 9, 2020

As you’d expect in these times of social distancing and economic uncertainty, and as is the case for so many non-profits, RSRT’s fundraising is down. Holding real time events, our leading source of donations, is out of the question right now. Everyone’s safety and health are of paramount importance. Six major spring events for RSRT have been postponed. Eight summer and fall events are in question.

I’m proud of and grateful to the families that had planned for these events. I was looking forward to being there and seeing everyone. Many of these families are reaching out by email to their networks who would have attended the events to ask them to contribute to RSRT if they can. They’re doing this thoughtfully, acknowledging that this is a very challenging time for so many people.

Crowdfunding by families, another important source of funding for RSRT, is also down. Fundraising in any way from your network always takes a bit of guts; a little mettle to suspend the “what will people think” nerves. I think those nerves are, understandably, especially acute right now.

All of this brings up a very important question I’ve been asked a number of times recently: Is it appropriate to fundraise for RSRT now?

I don’t have a one-word answer. What I will say is that the best and most effective fundraising, at any time and in any circumstance, is done personally, case by case, person by person. The reason events are so successful is usually not because of mass emails or wide social media promotion. Those things can be helpful, of course. But most often the driving force behind the funds raised by an event is families reaching out one-on-one, letter by letter, email by email, to each person in their networks. Even crowdfunding, contrary to its name, has its biggest impact when the approach is personal. I’ve seen quite a few families start campaigns on RSRT’s platform and get a handful of donations when they post their campaign on social media. But when they send out their campaign by individual emails to friends and family, the results can be quite remarkable.

So, can we fundraise yet for Rett research? My take on it is, yes, we can. But—and this is a very important “but”—it has to be done especially sensitively and graciously, with acknowledgement that this is a difficult time for everyone. If you’re starting a crowdfunding campaign on RettGive or Facebook, let people know that you’re aware of the current environment, and that you understand if they can’t support now. And do your outreach case by case. If someone in your network has been directly affected by COVID-19, now is not the time to send them your campaign. (You might even consider making a donation in their honor to one of numerous non-profits that provide services or research directly related to the coronavirus.) For people in your network whose financial situation has been impacted by the shutdown, now is not the time to ask them for support either.

On the other hand, there may be quite a few people you know whose jobs and livelihoods are not as severely impacted. They will likely be glad to help our cause. They might be at home and looking for ways to contribute to something meaningful. If you’re not sure of their situation, as long as you let them know that you’re aware that it may not be a good time for some, almost everyone will respect that you’ve asked for their support of something that matters so much to you.

Do I have a vested interest in this? Absolutely, I do. My daughter has Rett Syndrome. I’m as eager as all the other families out there affected by Rett to keep the research momentum going; to move us as quickly as possible to changing her life and 350,000 other lives.

I have always been impressed with the perceptiveness of Rett families. I think their experience with great challenges as well as with unbounded love gives them a special capacity for empathy; for putting themselves in someone else’s shoes. That strength of Rett families may be one reason why they’re such effective fundraisers for the research when they put their minds to it. It’s also why, in my seven years at RSRT, I don’t think I have ever heard from a family that their “what will people think” nerves were validated. On the contrary, their networks of friends and family so often express a sense of being lifted by the chance to make a difference to something bigger than themselves.

I welcome hearing your thoughts. I can be reached via email,, or phone, 609.309.5676.

Stay healthy and safe!


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