CUTE Connections 2023: SCN8A Families Find Fun, Fellowship, and Respite

In 2020 during the COVID-19 pandemic, The Cute Syndrome Foundation (TCSF) recognized that most families were in crisis mode and desperately needed to feel connected during a time of extreme isolation. In response, TCSF established a virtual social and emotional programming that is still going strong three years later, thanks to the sponsorship of Neurocrine Biosciences!

As the pandemic began to settle, TCSF realized that providing year-round virtual activities is still imperative to our families, but it was now time to focus on engaging in more face-to-face fellowship activities. In early 2023, TCSF announced the CUTE Connections grant, and immediately families jumped on the opportunity to organize regional meet-ups. 

The goal of CUTE Connections family activities is to give our families a safe and worry-free environment to first and foremost give and receive actual hugs, spend time catching up, and provide each other with moral support. TCSF wants everyone to experience much-needed community fun, with minimal financial burden to our families. In 2023, three summer CUTE Connections family meet-ups were organized with TCSF grant funds totaling over $6,000.

The Inaugural CUTE Connection: Atlanta, Georgia
The first CUTE Connection was held in Atlanta, Georgia with eight SCN8A families represented! The weekend was spent visiting the Georgia Aquarium, including a behind-the-scenes tour as well as enjoying lunch at the aquarium. They finished the day with dinner at the Mellow Mushroom where families had a chance to get to know each other or get caught up with those they hadn't seen in a long time. 

“My family thoroughly enjoyed the Cute Connections gathering and can’t wait for the next one. It was so nice to be with families like ours in a fun setting and get to know everyone better. The kids loved meeting everyone their own age and it was great for our older son who doesn’t have scn8a to meet other scn8a siblings.” -Madison Whingham, Mia’s mom

"The weekend was a fantastic way to put names and faces together. Truly an amazing experience where our daughter could interact with others in her peer group." -Cheri Authement, Lauren’s mom

The Second CUTE Connection: Branson, Missouri
The second TCSF-sponsored family meet-up event involved six families meeting in Branson, Missouri! During this event, families impacted by SCN8A were able to spend the day with others who “get it” and live similarly to them. 

TCSF paid for the admission to White Water, a waterpark in Branson, and provided lunch for the group. Two private cabanas were also provided so that families would have space for their medical necessities, changing areas for their children, shade, and fans to keep cool. The cabanas were the perfect setup that allowed our vulnerable children a way to enjoy the day with friends and family and take breaks as needed. The day did not go without a few seizures, but the kids had a blast lounging at the splash pad, floating in the lazy river, and sliding down the water slides. It was a great day making CUTE connections within our group.

“We loved being able to gather in person while having a day of fun. Connecting with other families of children with SCN8A has been wonderful for us, and we are thankful that The Cute Syndrome provides opportunities to do so.” -Rebecca Turpin, Cubby’s mom

“We are very fortunate that The Cute Syndrome is so focused on supporting the mental health of the families of children with SCN8A. It was such a nice change of pace to spend time with other families sharing stories of both trials and triumphs while also doing fun activities.” -Megan Gard, Clayton’s mom

The Third CUTE Connection: Milan, Italy
The third CUTE Connection was held in Milan, Italy for a weekend of fun at a resort that accommodated 13 Italian SCN8A families! Everyone arrived on Friday afternoon and enjoyed chatting in the two small pools dedicated to children, plus an Olympic-size swimming pool for siblings and adults as well. Then, they all met for a lovely dinner.
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On Saturday morning, Rossella, Enrico's mom, organized a visit to the Acropolis of Populonia, with its temples, buildings, mosaics, and Roman roads, as well as the ruins of the huts of the first Etruscan settlement. Families were free to join the visit or stay at the resort, enjoying the pool. After lunch, Cinzia, Aron’s mom, led a knitting class while Michol, Emma’s mom, entertained children using storytelling cards.

In the late afternoon, there was an organized football match where parents and kids could compete! After dinner, Enrico’s parents, Rossella and Piero played guitars and sang, while families enjoyed music and chats. Families said goodbye over breakfast on Sunday morning and made arrangements to meet at the next gathering.

"These rare moments help us not feel alone and represent an important enrichment for our lives." -Loredana, Flavio's mum

 "I want to be on this vacation forever!" -Mattia, a child with SCN8A

A Summer of SCN8A Family Fun
Overall, 2023’s CUTE Connections created opportunities for SCN8A families totaling over 125 people to enjoy a bit of summer fun and respite from the day-to-day stressors our families typically face when living with an SCN8A diagnosis. 

Upcoming Winter CUTE Connection in Orlando, Florida
Stay tuned for details on the winter TCSF CUTE Connection family meet-up on Saturday, December 2nd in Orlando, Florida, that will be held in conjunction with this year’s annual gathering! This fun-filled family day will follow the 9th Annual SCN8A Clinician, Researcher, and Family Gathering on Friday, December 1st. TCSF has a lot of exciting surprises up its sleeves…you may even get to see Spiderman, enjoy a much-needed relaxing chair massage, or hang out by the pool in a private cabana! We can’t wait to see you there!

If you are an SCN8A family and are interested in organizing a regional family meet-up, you may find more information on the CUTE Connections grant application process here: thecutesyndrome.com/cuteconnectionsgrant