The Cute Syndrome Foundation was one of the recipients of CNF’s $10,000 RISING Tides grants in 2020.
The Cute Syndrome Foundation funds medical research, raises awareness, and provides family support for those with SCN8A mutations—a known population of approximately 450 world-wide. This mutation causes severe epilepsy, movement disorders, medical fragility, and developmental disability. They have a tight-knit community and the foundation, with a team of 30 volunteers, is constantly trying to find ways to provide for this community—their support, their health, their hope, their future. This has become especially pressing lately as a community that is at baseline isolated and terrified of the impact of other people’s germs, is being hit hard by the ripple effects of the pandemic.
“We are so grateful to Child Neurology Foundation for not only making this program possible, but doing so in a way that allowed us to quickly and flexibly respond to our community’s needs in real time.” – Hillary Savoie, The Cute Syndrome Foundation
Below are some highlights of the book club supported by the RISING Tides grant, with details and photographs provided by the Cute Syndrome Foundation. The group read ‘City Of Girls’ by Elizabeth Gilbert.
The book club has been one of our most popular groups. Most of us in the group had never been in a book club, because the times in our life when our friends were doing such things, we were in and out of hospitals, learning about feeding tubes, and trying to keep our children alive. We are a group of people who were pretty sure book clubs weren’t for us.
However, this book club is, absolutely for us.
And, thanks to the CNF funding, we’ve been able to make participation as easy as possible by providing gift cards to the book club members for the books we are reading, at least through October.
Being in these book club conversations has been really touching. We all love that we can join together to do something “normal” where we make the rules. There is no pressure. Some people get behind; it doesn’t matter. We talk about what we want to talk about. And we do all of this, even as one new mom has to step into the background for a minute to help her child who is desatting, or another mom administers medications via feeding tube without missing a beat, or another mom who rarely sleeps shares that she feels guilty for the only break she’s taking that day.
Also, a story is never just a story—stories are also a means to better understand the world, other people, and yourself. So, we talk not just about the book we are reading, but about what it makes us think about. We have participants in the group from among our longest standing community members as well as some of our newest community members—so we are able to connect across experiences, offer advice, share information. While we are nearing the end of our grant funding, we have committed to continuing to meet as a club.
I have been working with and organizing this community for years—leading activities, talking with parents. And this group has consistently had some of the most real, compassionate, and helpful conversations of which I’ve ever been a part. I find myself watching the faces of moms who literally have been through the most unimaginable things with their children—medivac flights, DNRs, regularly resuscitating their own children—just being women, together, supporting each other, without judgement. And it was one of the most powerful experiences I’ve ever had within this community or any other. It was as if we all needed to let ourselves just be moms with a beautiful book, in order to understand that we could open up in this way. – Hillary Savoie, The Cute Syndrome Foundation
Thoughts from parents of the book club
“The Zoom book club has been great. I love connecting with other lovely mums who get what life is like with our beautiful SCN8A kids.” – Katrina
“Joining this book club not only gives me a reason to take time for myself, but also an opportunity to be with others who are in the same situation and allows us to focus on something other than our daily lives.” – Karen Varner
“I have always loved to read, but in recent years I haven’t found as much time for it as I would like to. I’m so glad we picked this for our book club. This book has been exactly what I needed right now! I was interested right away, and each time I pick it up to read I don’t want to put it down.” – Sandy Bush
“This life isn’t always easy. Having something as wonderful as [the book City Of Girls] to relax and escape with helped in so many ways. It has also given me and the other parents an opportunity to bond over something that isn’t the day to day we are constantly living in. We were brought together by something that is devastating. This reminds us that we are more than just special needs moms. We are women, friends, and sisters too. So, thank you for creating a magical place for us to escape to these last 3 weeks.” – Dianely
“I hate everything about SCN8A except that it has given me the opportunity to meet some amazing warrior children and their devoted parents. There is this unique bond that has formed between the SCN8A mothers in this book club that has fostered a completely accepting non judgmental haven one hour a week where we can relax in the company of people who get it.” – Megan Gard
“This book club has been lifesaving for me and City of Girls could not have been a better pick for our first book. It got me excited about reading again and gave me something to do to get my mind off my crazy and life and let me go to a different headspace for a short while. I forgot how much I loved reading.” – Heather Crowley
“It was a treat to read such a fun book before bed to relax and in what little spare time I have.” – Madison Wingham