SSRA | Living with SS

Superficial Siderosis Research Alliance 501(c)(3) dedicated to funding research | Living With SS information and insight on living with superficial siderosis

[SSRA | Living with SS @LivingwithSS]

#teamsuperficialsiderosis #we_are_the_ssra #awarenessday #iwishpeopleknew

[SSRA | Living with SS @LivingwithSS]

#teamsuperficialsiderosis #we_are_the_ssra #awarenessday #iwishpeopleknew

[SSRA | Living with SS @LivingwithSS]

#teamsuperficialsiderosis #we_are_the_ssra #awarenessday #iwishpeopleknew

[SSRA | Living with SS @LivingwithSS]

#teamsuperficialsiderosis #we_are_the_ssra #awarenessday #iwishpeopleknew

[SSRA | Living with SS @LivingwithSS]

#teamsuperficialsiderosis #we_are_the_ssra #awarenessday #iwishpeopleknew

[SSRA | Living with SS @LivingwithSS]

We asked our community what they wish people knew about living with Superficial Siderosis 📷

#teamsuperficialsiderosis
#we_are_the_ssra
#awarenessday
#iwishpeopleknew

[SSRA | Living with SS @LivingwithSS]

The 19th of September marks Superficial Siderosis Awareness Day. Living with this rare progressive disease means battling hearing loss, balance issues, lost independence and a lack of understanding 💚Today listen, learn and support those living with #SuperficialSiderosis

[SSRA | Living with SS @LivingwithSS]

#NewProfilePic

[SSRA | Living with SS @LivingwithSS]

Superficial Siderosis Awareness join us on September 19th #teamsuperficalsiderosis

[SSRA | Living with SS @LivingwithSS]

Join us: https://t.co/IK5rVMHcq6
#TeamSuperficialSiderosis #TrailGrinder2025 #5k #10K #30K

[SSRA | Living with SS @LivingwithSS]

Join the 2025 Trail Grinder Virtual Race on Sept 13!
Walk, run, cycle, or roll anywhere in the world while supporting research into Superficial Siderosis Register today: https://t.co/IK5rVMHcq6

[SSRA | Living with SS @LivingwithSS]

Can’t race? You can still support vital SS research with a donation. Every contribution helps move us closer to treatments. Challenge yourself. Rally your friends. Make every mile matter.
Together, we’re creating a future for those affected by Superficial Siderosis.

[WouterSchievink @WouterSchievink]

90+% of patients we see with infratentorial superficial siderosis have an underlying spinal CSF leak. This week we saw two other causes: a IVth ventricular ependymoma (postop dural thickening from overdraining shunt) and bilateral jugular vein occlusion ⁦@LivingwithSS⁩ ⁦

[SSRA | Living with SS @LivingwithSS]

Inside the 2025 Research Roundtable: How Scientists, Clinicians, and Patients Are Charting a New Course for Superficial Siderosis https://t.co/AkKT3auZ0g #Neuroscience #neurology #biobank #superficialsiderosis

[SSRA | Living with SS @LivingwithSS]

2025 Superficial Siderosis Symposium Keynote Speaker Michael Levy MD, PhD Superficial Siderosis Clinic and Research Lab MGH #2025SSsymposium

[SSRA | Living with SS @LivingwithSS]

#hematology Dr. Philip Haddad clinical care presentation Monitoring and Managing Chelation Therapy in Superficial Siderosis https://t.co/sy2FfFrNXl #2025SSsymposium #chelation #superficialsiderosis

[SSRA | Living with SS @LivingwithSS]

#neurosurgeon Dr. Wouter Schievink on Surgical Treatment of Superficial Siderosis https://t.co/S0XsQklUpr @WouterSchievink @spinalCSFleak #2025SSsymposium

[SSRA | Living with SS @LivingwithSS]

Keynote speaker Dr. Michael Levy, Superficial Siderosis Clinic and Research Lab @MGHNeurology Superficial Siderosis https://t.co/4iEvYmo7Vf #2025SSsymposium #neuro