Fundraising: The Backbone of Research

6 min readNov 22, 2021

PARENT TIPS

NOVEMBER 22, 2021

Maarja is a mother of three. They were the first family in Estonia to receive a SYNGAP1 diagnosis (daughter Elisabet, age 3 in 2018). Maarja is dedicated to raising awareness, fundraising for a cure, and advocating for families of loved ones with special needs .

Fun & Functional Fundraising Ideas

Fundraising is the backbone for research leading to treatments for our SYNGAP1 loved ones. We at Syngap Research Fund (SRF) are graced with amazing leaders, board members and volunteers who are giving their best while also working and raising children. But developing treatments takes money.

We all would like to be able to donate as much as possible towards that goal. And while we know everybody is not able to host big gala projects, that is okay. One day you might find resources for what today is unthinkable. But in the meantime, here are 10 ideas for fundraising events that may be perfect for you.

Of note: The photos at the end of this article are from fundraising events that I created in the past two years based on some of the suggestions below. Try it! You’ll be inspired by how generous people can be.

‍It’s your Syngapian’s birthday. Let friends and family know that you would appreciate small gifts for your child instead of big gifts. At the celebration, a box or jar could be added to the gift table for donations to SYNGAP1 research. On your birthday, do the same.
‍Also on your birthday, do a Facebook fundraiser. They are easy to set up; Facebook prompts you! Be the first to donate to encourage others. Share it and tell your community about it. (Editor’s note: I refresh the donation page every day and update with an adorable new picture of the Syngapian.)
‍Another birthday suggestion for the workplace: Ask colleagues not to bring flowers but donate to SRF, and offer them cake in return.
‍Local sports clubs — have a game day. Make some cakes, cookies or lemonade, whatever you can create. Ask your family or friends to cook also. Write, draw or print out posters about SYNGAP1 and the SRF charity. It could last 2 hours or as long as you wish. I managed to collect over $1000 in 4 hours at a small football club family day!
‍Have a food fest on a beautiful weekend at your local park/playground. This idea works equally well at school/kindergarten family days or at nearby community festivals. If you’re not ready to be open about SYNGAP1 or special needs, ask your friends to help.
‍Open a pop-up cafe for one day in your garden. Ask friends and family to join and help with preparations. Put out signs and ask people to come, eat good food and be educated about SYNGAP1. I managed to collect $5000 doing this in our garden. Wow! Make posters, put some extra effort into cooking and making everything look beautiful. If it’s fun, each year the same people will come again.
‍Again, using a beautiful day in the park, at a local stadium, community festival or in front of your house, make posters and invite people to participate in fun games and sports. The winner will get free pizza, cake or tickets to the cinema. Games can be varied with dice, drawings or other means.
‍If SRF is having some bigger fundraising campaign: There is an opportunity to set up a local fundraiser under the main fundraiser. To make it successful, share it more than once, write something about it so people understand what it’s for. Social media is full of information and donating is often something that people do based on emotions. So sharing opportunities more than once is important, because otherwise it will simply get lost. I have done it three times and every time I have raised much more than I could have given alone.
‍Make some hand-made products. Cookies, candles, notepads, you name it! Make them SYNGAP1-specific. (See photos below.) Ask friends to join. Sell these goods online on Facebook in a one-week campaign. I did it and we sold gingerbread cookies, lavender scented bags, peppermint tea in paper bags, macarons in boxes of ten, and lemon curd in jars. We earned $1000 dollars to support the biomarker study this way. Wow! Schoolgirls made candles, sold them online and donated the money.
‍Everything is possible. Being active means that kind people and even charity organizations will notice you. One national charity here in Estonia noticed my Facebook fundraiser and supported SRF research on epigenetics with $20,000 and SRF research on biomarkers with $3000. How epic!! This group is ready to participate in future projects also. How amazing is this!

Every donation gives so much strength because it shows support. And support is appreciated in every SRF project; these projects will not happen without support.

Donating can be a natural part of our lives. Yes, fundraising is hard. It can be uncomfortable. But as soon as you feel it, think about the reason why you are doing this. Every contribution takes us closer to treatments and our superheroes deserve it. They deserve our efforts. “Time is brain!” as our managing director Mike Graglia says!

And speaking of time, now (end of year as this blog is being published) is the perfect time to have a fundraiser, as the holidays are the season of giving! You can help people channel their good will into a great cause — quality of life for our loved ones! It can be as simple as directing people to SRF’s Giving Tuesday campaign. It feels good to give.

Feel free to contact me if you have any questions or if some of these points give you ideas to organize something of your own. I am glad to help.