#Lemonade4Syngap — How supporting needed science was surprisingly fun for this #SYNGAP1 family

PATIENT STORIES

JULY 29, 2020

Caroline is a SynGAP mom who understands that for progress to happen for our kids, we all need to support research and raise awareness for SynGAP. SRF is grateful for her advocacy.

Please, please, please consider donating to the #SRFHeller project as this research is current and needed! Alternatively, start your own #Lemonade4Syngap fundraiser in your community! For our family, this experience was incredibly rewarding beyond being able to contribute to an important cause & bring us closer to finding a potential treatment option for our children.

Perhaps in light of having nothing particular lined up for the summer due to the Covid pandemic, my nine-year-old was the one who pushed us to host this lemonade stand in our community here in New York. After all, he’s equally motivated as we are to find a treatment for his brother, Yonas. At first I was not particularly enthusiastic about the idea, because — let’s be real — how much money could you possibly raise selling a cup of lemonade? Regardless, I decided to support Aayan’s enthusiasm, as I figured it could be an opportunity for him to hone certain skills. With a little bit of prep and planning (e.g. putting together posters and flyers, gathering together of supplies, working on putting together a “pitch”, juicing of lemons to create homemade lemonade), all of which he actively participated in, we were able to launch into success.

Perhaps most importantly, I had totally forgotten what an incredible advocate #SyngapSiblings can be! This advocacy was essential in making plenty of sales and enticing customers to donate larger amounts ($20 per cup of lemonade, anyone)? We let Aayan do all of the talking while we withdrew to pouring the lemonade.

Aayan had a blast and felt empowered by doing something stereotypically more “adult.” He was even able to reach out to some of his classmates to donate money toward his cause.

Unbeknownst to us at the time of the lemonade fundraiser, we realized afterwards that we now had a rather attractive platform from which to continue fundraising among our friends and family. “Please Donate to Aayan’s Lemonade Fundraiser!” sounded more appealing to people than having us (parents) reach out for donations. Consequently, while this project is current and incredibly needed to push us as a community closer toward a SynGAP treatment option. This project has been reviewed and endorsed by SRF SAB and there is already a blog explaining it & a fundraising page set up. You can either contribute your raised funds to an existing campaign OR set up your own. Best part — it is so easy to set up! If you are concerned about this process, no worries — Peter Halliburton will help set you up!

I urge all SynGAP families to please consider organizing a lemonade stand or fundraiser of your own. It could even be a virtual one in the age of COVID and the understandable discomfort of putting yourselves (or your loved ones) “out there.”

Remember this final thought: if each existing Syngap family raised only $100 we would be done!

Really, think about it!

Hugs,

Caroline and Family

Aayan, Yonas and their sister Amina.