where's my spinal fusion ski girls at???

Hey all, I'm fused skull to T1 and L2-L3, I've had 36 surgeries (yes, wtf) and been through hell and back with this crap. I'm now skiing this season and I'd love to connect with other EDS athletes. Trouble shoot a few things like feet neuropathy, etc. I know there's some other EDS people out there going for it and I'd love to know I'm not the only one giving it a go. Thanks