Breaking a $6 Million Fundraising Record this Year!

Dear Friends,

I don’t want to count our chickens before they’re hatched, but we’re on pace to break a fundraising record this year at RSRT. There is much to do and it’s going to take more people than ever contributing as we get near the end of the year, but we could hit the $6 million mark for the first time. As a parent, this thrills me. It means more money for research, which speeds us towards our ultimate goal—treatments and a cure for all our daughters. It also reminds me how grateful I am to RSRT’s generous supporters and the families that hold events to raise funds.

It’s incredibly exciting to see these dollars being put to work immediately for girls and women with Rett Syndrome. Over the next month, Monica and the RSRT Board will make major grant awards to continue current research projects and support promising new ones. The research that these funds are making possible is remarkable, but that’s a topic for another post. For this post I want to respond to some excellent questions I’ve been asked recently—

  • What’s the breakdown of where RSRT’s support comes from?
  • What percentage comes from events?
  • How much comes from individual donors?
  • How much comes from corporations and foundations?

The answers to these questions may be surprising to some. They also give us a roadmap not only for reaching $6 million this year but also for what needs to happen to grow our funding next year and beyond.

So far this year, almost 60% of RSRT’s funding has come from events spearheaded by families. This includes ALL events—from backyard barbecues, to galas, to online campaigns. What may be surprising to some is that virtually all the contributions to those events came from individual people. There’s a common misperception that corporations are big contributors to events. This really isn’t the case; it’s people who give to events. Families that run events often get local companies and restaurants to donate space, auction items, and food. But for the most part the funds raised by events come from individual people buying tickets and making sponsorships. (This is not unusual. Of the $360 billion donated to all causes last year, less than 5% came from corporations. The vast majority of all philanthropic dollars come from individuals.)

Tim & Eleanor Freeman

Tim & Eleanor Freeman

About 33% of our funding so far has come from U.S.-based and international Rett organizations. These are the hard-working and generous organizations like Reverse Rett in the UK, the Rett Syndrome Research & Treatment Foundation in Israel, Girl Power 2 Cure, and the Rocky Mountain Rett Association, to name a few. These organizations raise their own funds (which also come mostly from individuals) and then distribute portions of that funding to RSRT.

Some of our funding comes from gifts unrelated to events. Most of these are also from individuals, often parents, grandparents, or friends of families affected by Rett. This percentage usually picks up in the last six weeks of the year as people make end-of-year contributions.

So what’s missing from this breakdown? Who isn’t contributing to RSRT? Let’s start with major foundations. I won’t name them, but you know the ones I mean—big foundations launched by recognized billionaires. Those foundations have established funding interests. They fund important causes, but there’s just not a fit with Rett research (we are always keeping an eye on these foundations to see if there’s any connection to Rett and if their funding interests change). Government agencies also haven’t funded RSRT, and for a number of reasons I won’t go into here, it’s unlikely they will. We also get very few random donations—that is, donations from people who aren’t connected to a family affected by Rett (sometimes it’s a connection to a connection).


To me it’s reason to be excited about our collective power as families affected by Rett to move the needle on the research. 

So what does all this mean? To me it’s reason to be excited about our collective power as families affected by Rett to move the needle on the research. It’s a reminder of how much we owe to the families that fundraise and spearhead events that have gotten the research to the promising stage it is now in. It also makes it clear that the path to growing our funding and moving that research needle faster probably doesn’t go through a major foundation or corporation. The path to accomplishing that lies in getting more families that are affected by Rett involved and starting events.

My hope is that understanding this breakdown of where RSRT’s support comes from might inspire some new families to start events in 2016. Everyone wants to give to our cause when they are given a way to do it through an event (there are other ways to fundraise too that I’d be thrilled to talk about with you). Every dollar raised matters to the research; and you’d be surprised at friends, relatives, and colleagues who come out of the woodwork to support our cause when you hold your own event.

If you want to get involved and start an event or do an online campaign in 2016 please call or email me. Now is the time to get things rolling for next year. I can help every step of the way. Thanks so much.

Tim Freeman

  • Megan Nunn

    Very interesting and motivating! Thank you for your hard work and dedication!

  • Danny Robinson

    Hopefully Next year we can do even more,, our Girls Deserve a chance at a normal life..

    • RSRT

      Couldn’t agree more. We’re excited about funding more research next year and just had a great meeting with several leading researchers in the field a few weeks ago who certainly share our enthusiasm.

  • Angie Traxler

    Hope is being able to see that there is light, despite all of the darkness.

  • Kelly Chatto

    Im on board with my newly diagnosed Goldie Girl from Australia. Lets shut Rett Syndrome down!x

  • Elizabeth Gonzalez

    I can not wait for the day that I can say “my daughter beat Rett Syndrome.”

  • Renee

    Interesting information. It really shows how powerful the Rett community is. Looking forward to 2016!

  • Žana Piplović

    Interesting.This gives us a hope and strength. Our girls are waiting !

  • troubled in the city

    This is so awesome. My son could really use one so he can communicate with us.

  • Lisa Pickering

    I’m even more inspired now to plan an event for our community next year!

  • Karen Weinrauch

    Very exciting information! Thanks for all you do!

  • Jennifer Michelle Touchton

    That’s amazing! I’m so excited about some of the research going on right now!

  • Amy Whittard

    Thank you for the opportunity!

  • Flors Martínez

    I would like that in Mexico, families affected by the Retts syndrome unite to raise funds for research on the syndrome, as do famlies in other countries. I, of course would like to be more involved and that this long struggle have a happy end.

    thank you for the information, It makes me happy that many are struggling for the cause I do, and that there have been great advances toward is cure.

    • RSRT

      Thank you Flors! Let us know if there is any way we can help you organize and raise funds in Mexico.

  • Nikki Dawson

    Great information!

  • Kim Bartlett

    Thank you to everyone that has given their money, time and love you help make Rett (and MECP2 Duplication Syndrome) history!

  • hester houweling

    we keep on sharing, we keep on giving because we keep on loving!

  • Lauren Green

    A cure is coming! It’s only a matter of time. #thinkpositive

  • Tamar Nutsubidze

    Thank you for this chance!

  • Gina Newcomb

    praying for all of the Angels…my niece Tianna is my inspiration..

  • Stephanie Fullbright Stearns

    I purchase a lot of things on Amazon Smile and make sure that RSRT is my charity of choice when I purchase. I know it’s not much, but every little bit helps. I hope everyone will consider adding RSRT as their charity of choice when they shop online through Amazin Smile.

    • RSRT

      Thanks Stephanie! Here is a link that you can share with friends and family:

  • Maria Hernandez

    This is awesome!

  • Ronna Reid


  • Rett Angel Fie

    Great post. Appreciate the hard work to fund raise for the research and find a cure… Making Rett history!!!

  • Jack Cheng

    RSRT is my favorite charity. I hope Mark Zuckerberg can also have time to look into this with his wife to speed up the rett solution as he recently donated most of his wealth for medical reserach.

    • RSRT

      Thank you @disqus_eghgalICvd:disqus! We’ve been closely monitoring the Chan Zuckerberg Foundation and are taking steps to get in touch with them. We feel like we’d be the perfect fit!

  • Klhoil

    Thank you for the chance to win a tobii. Always praying for a cure for a dear family member. In the meantime would love to see her be able to communicate with her Mom and Grandma.

  • travisadams

    Does the Rett Syndrome Research Trust participate with like Smile.Amazon.Com? I’d like to direct people to there since i work in a tech role in healthcare and know a lot of friends who already have amazon accounts.

    • RSRT

      Hey @travisadams:disqus, we certainly do! You can link directly to us here:

      Alternatively, if you go to there is an option to select a cause in the upper left hand corner directly below the search field.

  • Susan Morrison

    Still praying for a cure for my little girl who has Rett. The Tobii can help so many girls communicate. You can see in their eyes (like my daughter) that theu desperately want to say something. Also, would love to start a fundraiser for girls who can’t get a diagnosis because insurance won’t cover the cost of the test. The

    • RSRT

      Susan, we can’t wait to give these girls a voice. Great idea about the fundraiser!

  • Ana Rosa

    Families are the thriving force to the success of fundraising because we go through it on a daily basis. I love that, because when there is a breakthrough our big Rett family is what has maid a major impact. We want to do more for our kids(my son) and we do anything possible to make their lives easier and most of all memoriable.

    Thank you for sharing this information.

    • RSRT

      Agreed, without the passion and resilience of the families in the Rett/MECP2 community we would be decades behind. Together if we keep fighting and spreading the word we can beat this.

  • Tracy

    Thankyou to everyone who contributes to raising money for research towards my little girl and all others affected by Rett syndrome. Merry Christmas and a Happy New Year to you all x

  • Islam Mohamed Ali

    I wonder how can we as families try to alter the interests of big organizations to include Rett in their funding lists..

  • bridget12

    There’s so much HOPE here! Thank you for continuing to push research forward for our girls!!

  • esther r fischer

    Kudos , to the amazing families that are currently contributing their time and effort for our girls to raise funds that are desperately needed for research !
    Our family especially our daughter Gitty is very grateful
    Esther r Fischer

  • Amanda Autar

    We hope to soon find a cure for these lovely girls!!

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