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The Most Important Research Factor: You

December 5, 2022

A few weeks ago I was at our Reverse Rett LA gala, and one of our supporters asked me how many events we have each year and if they are all similar in scope and feel. It ended up being about a 15-minute conversation, and it was a great reminder to me that you, our donors who make all our research possible, might welcome a brief overview on the sources of RSRT’s funding.

In a typical year, we have about 20 events that raise $100,000 or more. In addition to Los Angeles, these events are in New York, Chicago, Philadelphia, Austin, Seattle, San Francisco, Washington D.C., as well as in small towns in Ohio, Cape Cod, and Long Island, among others. Every one of these events is spearheaded by a family that has a child with Rett syndrome or in some cases by multiple families. How many dollars each event raises depends on the organizing families’ networks — how large the networks are, how philanthropic they are, and how much they have grown to care deeply about the cause. The vast majority of funds contributed to these events — usually about 90% — come from individual and family donations. Foundations and corporations make up about 10% of the funds, and those donations are always facilitated by someone who knows one of the families that’s chairing the event. In fact, 100% of the sponsorships and donations to RSRT events comes from or through people who know one of the Rett families.

There’s a big range of what these events look and feel like. LA, New York, Chicago, and D.C. are galas in beautiful, elegant event spaces. Other events have been at vineyards, golf clubs, restaurants, and in peoples’ homes. We had an event this fall near Albany, N.Y., that was under a tent and felt like a county fair. More than 1,000 people attended and supported this event.

In addition to these larger events, dozens of Rett families hold smaller fundraisers—backyard barbeques, picnics, walks, one family even did a car show a few years ago. They all matter a great deal to moving the needle on the research. And every donation or sponsorship to these events, from $25 to $100,000 and more, helps get us that much closer to changing lives.

All told, events account for around 60% of RSRT’s funding in a given year. Another 30% of our funding is from donations and multi-year pledges unrelated to events. These gifts come from especially generous donors, as well as from Rett organizations, several of them international, that raise funds in their home country and then contribute them to RSRT. The final 10% of our funding comes from crowdfunding campaigns led by families that have a loved one with Rett syndrome.

The last two years we’ve averaged about $8 million in total annual funding. Pre-pandemic we were at over $10 million. We aim to get those numbers back up because we most certainly need the funds to pursue our research priorities and maximize our likelihood of curing this dreadful disorder. As always, we do our work at RSRT with the utmost efficiency. Our overhead expense rate has averaged 6% since RSRT was founded. I’ve worked for several nonprofits in my career; I’ve never worked for one with such a commitment to its mission, to transparency, and to integrity.

For these last couple sentences I remove my RSRT hat and put on my parent hat. I have a 13-year-old daughter with Rett syndrome. She has never spoken a word. She has never taken a step on her own. But she is a bright light, full of personality and humor and love. I wake up every morning feeling optimistic about her life and her future. I can do that because of you, every one of our donors who fuel this research forward. Thank you so much.