Our artist relations consist of small back and forth conversations with musicians that have supported our craft, in turn we do our best to share their music, shows and things that are important to those players. This is important to the Stickley family : )
Jon Stickley has been supporting our efforts for years and we have watched as he has faced challenges within his family, not only with his wife’s stroke recovery, but with his son’s rare disease. Both Jon and Julianne have rallied and learned so much about the care that is needed for Callum to thrive. Julianne shares lot of successes and struggles on her Instagram page and recently, as a family of four, they all went out to eat – maybe something we think it second nature, but for them it was a new experience and a successful one!
I have seen amazing posts from their fundraising events called “Cords for Callum” and wished we lived closer to participate. We did buy a silent auction photograph of Billy Strings that hangs in our show room, so even though we could not be there in person we tried to help in some small way. The next fundraiser in March of 2026 so be on the look out for it as they have awesome auction items, cool t-shirts and if you are in the area amazing musicians playing for Callum! Maybe you have something you can donate for the auction? We will keep up on what is happening in this special family and know they will continue to thrive because of their positive outlooks and community that loves and supports them.
They are having a smaller online fundraiser currently for STXBP1 foundation that you can find more info on this page – the goal is $2000 and it is currently at $1793… You can also support Team Callum by going to Bonfire for 2025 t-shirts!
Here is what Julianne shared with me about what their son Callum and his rare disorder called STXBP1.
Callum Stickley was born with a rare neuro developmental disorder called STXBP1. This disorder causes the following symptoms in varying severities: global developmental delay, cognitive impairment, Epilepsy, Autism, and communication and movement challenges including ataxia and tremor. Seizure activity is also common for kids with STXBP1. Callum began physical, occupational and speech therapy at 11-months old, and currently receives around eleven hours of therapy a week in both private and school settings. Callum also participates in several three-week intensive therapy sessions per year, which is where he experiences the most growth. He is learning to communicate with his AAC (augmentative and alternative communication device), how to feed himself, and how to walk. He’s also learning social skills, and how to play with toys, both of which benefit him greatly in his preschool life, because Callum loves people and school. Callie is not only the hardest working kid we know, he does it all with a smile on his face, a song in his voice and an endlessly sunny disposition that inspires everyone around him. We call him our Sunshine Boy, because he spreads his light wherever he goes.
Julianne and Jon Stickley, parents of Callum, are dedicated to advocating for their son on this rare and challenging journey. Each March, they host a benefit to bring their community together in support of Callum and others affected by STXBP1 disorders.
The benefit is more than just a fundraiser — it’s an afternoon of music, connection, and hope. Proceeds directly support advancing research for treatments and a cure, while also helping to raise awareness of this ultra-rare condition. The event not only generates critical funds but also builds a stronger network of love and solidarity around Callum and his family.
“People’s willingness to give means the world to our family. Every donation, every bid and every shared moment of support brings us closer to making a real difference in Callum’s life, and the lives of the 1,500 other STXers just like him around the world.
The STXBP1 Foundation is a parent led group “dedicated to finding a cure for STXBP1-Related Disorders (STXBP1-RD) while improving the lives of our patients and families.” STXBP1 researchers and scientists are closer than ever to finding a cure. Thanks to community engagement and study participation, the first clinical trials in STXBP1 disorders have begun, with many more therapies currently in development (learn more here (https://www.stxbp1disorders.org/fast-forward)
Clinical trials are research studies involving people that test new ways to detect, diagnose, treat, or prevent diseases. For a general overview of clinical trials, click here (https://www.stxbp1disorders.org/blog/an-overview-of-clinical-trials) .
