Last year Luke Pitino, who was diagnosed with SCN8A epilepsy in his first year of life, and his family raised $71,000 for the Epilepsy Foundation of Metropolitan New York (EFMNY) and The Cute Syndrome Foundation (TCSF) during the Annual Walk to End Epilepsy! This effort established a fantastic and on-going fundraising partnership between EFMNY and TCSF.
This year Luke and the Pitino family are at it again!
Since Luke’s diagnosis, his family has worked diligently to spread awareness and fundraise for The Cute Syndrome Foundation and the SCN8A community. His father, Ryan, joined our board of directors in 2019.
Like last year, half of the money raised by Luke’s Walk to End Epilpesy will be donated by the Epilepsy Foundation of Metropolitan New York to The Cute Syndrome Foundation to support SCN8A awareness and research.
This year, since the Walk will be held virtually, we can all join Luke’s team, from far and wide, to support Luke, EFMNY, and The Cute Syndrome Foundation. Can you help them reach their goal of $50,000 in support of EFMNY and TCSF?
Support the team below between now and October 18th to become an #SCN8Achampion and join Luke and TCSF on the Annual Walk to End Epilepsy!
The Cute Sydnrome Foundation is thrilled to announce that starting on September 30th we will be holding a five-week Clinical Trial Readiness Educational series for the SCN8A community. Take a look at the topics we have planned below:
TCSF believes that one of the most important things we can do to help prepare our community for any and all clinical trials focused on the SCN8A community is to help ensure that our families are informed on how clinical trials work—as well as on general drug development, the ethics of patient data collection, and the variety of potential future therapies. This Clinical Trial Readiness Series will bring together panels of industry professionals, clinician researchers, and other rare epilepsy advocates to discuss these important details.
We are grateful to our generous sponsors, including Neurocrine Biosciences and Zogenix, for helping to make this important series possible!
In our first series event we welcome writer, advocate, photographer, and mother Rachel Callender to lead a workshop focused on the language we use to talk about our children. In this workshop we will connect around the idea that we need to be able to both talk about our children in terminology that allows us to help them (the language of science, medicine, development), but also in ways that allows us to celebrate them for exactly the extraordinary people they are, right at this moment. As we look with hope toward new therapies in our future, we also need to pause and remember the beauty at the center of that hope: Our children.
Take a moment to watch Rachel's message to the SCN8A community:
In June The Cute Syndrome Foundation received a Rising Tides Grant from Child Neurology Foundation to lift a social and emotional support program off the ground. This program has included zoom yoga and family martial arts classes, food and drink discussion group, a book club and access to meal kits, mindfulness app subscriptions, and gift cards for yoga mats, books, etc. We knew this programming would be meaningful. However, as we dove into it, we began to realize just how much our community needed this—to feel supported, engaged, and connected. Also, simply, to have a bit of fun in the midst of everything.
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. Here are two examples of how we were able to do use the funding, and what that gave the community.
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 desating, 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.
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.
Food and Drink Club and Hello Fresh Meal Kits
We did the hello fresh meal kits, no pictures because we made them and ate them right away! So delicious and such a nice change from our usual routine 😊
We have offered two food-related programs as part of the CNF Rising Tides Grant.
The first was to provide access to meal kits for families, so that they could just take a night off from meal planning and have fun prepping easy, interesting meals as a family. At first it seemed like the families were hesitant to sign up for the meal kits—it turned out that some didn’t want to take away access to people who might need it more. The team found this so touching—that as we were trying to take care of the community, they were trying to look out for each other. Others didn’t participate at first because they couldn’t believe that it was a simple as just saying yes. And then, it was a great joy to see those same families sharing photos of their food, explaining what the made, and what it meant to them. This struck us, as we know how important our perception of social support is to helping protect individuals from risks of PTSD, which is a risk within caregiver communities like ours. Showing that TCSF and CNF are here to offer care is part of demonstrating social support networks…and it can make a meal feel like so much more than just a meal, but rather a symbol that we are all in this together.
Our second program was a food and drink discussion group that met weekly to share recipes, talk about our favorite drinks, and do cooking demonstrations. We also spent a good amount of time just talking, laughing, and telling stories. One of our most entertaining sessions was with a mother in Italy, Cinzia, who demonstrated how to make Spaghetti all'amatriciana. We all had so much fun watching her cook, learning about bucatini pasta, which is spaghetti with a hole in it, which, according to Cinzia, exists in order to allow the for the sensation of “wind” in your mouth as you eat.
For me the Food and drink event was all about sitting back and unwinding and spending time with everyone. Most important was the laughter. Right now our world seems to have lost its humor so for me the laughter helped to ease my stress!
2020 has been quite a year. I know we are all disappointed about not being able to all be together in person for our 6th Annual SCN8A Clinician, Researcher, and Family Gathering in December. However, with the help of John Schreiber, Manoj Patel, and TCSF's volunteer team, we are planning a virtual Gathering so that we can convene as a community to share our work and updates from the last year. The Gathering is tentatively scheduled for Dec 4.
The Gathering platform will require a slightly different approach. We will also be piloting a new approach for sharing research--we invite all of you to submit abstracts for consideration for a panel discussion at our main professionals and families event as well as in-platform poster sessions.
Abstract Submission Information:
1. We are requesting abstracts detailing your SCN8A-related research. This is a great opportunity to share your recent scientific work and observations on SCN8A with the SCN8A community.
2. Abstracts should be 300 words or less (yes, please feel free to use your AES abstracts!)
3. Submit to me at firstname.lastname@example.org by September 30th, 2020
Looking forward to "seeing" all of you in December!