Superficial Siderosis Research Alliance 501(c)(3) dedicated to funding research | Living With SS information and insight on living with superficial siderosis
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We asked our community what they wish people knew about living with Superficial Siderosis 📷
#teamsuperficialsiderosis
#we_are_the_ssra
#awarenessday
#iwishpeopleknew
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
Superficial Siderosis Awareness join us on September 19th #teamsuperficalsiderosis
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: ssra.livingwithss.com/blog/e…
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.
SSRA | Living with SS retweeted
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
Inside the 2025 Research Roundtable: How Scientists, Clinicians, and Patients Are Charting a New Course for Superficial Siderosis ssra.livingwithss.com/blog/i… #Neuroscience #neurology #biobank #superficialsiderosis
2025 Superficial Siderosis Symposium Keynote Speaker Michael Levy MD, PhD Superficial Siderosis Clinic and Research Lab MGH #2025SSsymposium
#hematology Dr. Philip Haddad clinical care presentation Monitoring and Managing Chelation Therapy in Superficial Siderosis youtu.be/cIiJs09CpmQ?si=vWKF… #2025SSsymposium #chelation #superficialsiderosis
#neurosurgeon Dr. Wouter Schievink on Surgical Treatment of Superficial Siderosis youtu.be/cIiJs09CpmQ?si=GfwK… @WouterSchievink @spinalCSFleak #2025SSsymposium
Keynote speaker Dr. Michael Levy, Superficial Siderosis Clinic and Research Lab @MGHNeurology Superficial Siderosis youtu.be/cIiJs09CpmQ?si=WOUy… #2025SSsymposium #neuro
