SSRA | Living with SS

@LivingwithSS

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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Joined May 2015

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SSRA | Living with SS@LivingwithSS · Jul 1

#neurosurgeon Dr. Wouter Schievink on Surgical Treatment of Superficial Siderosis youtu.be/cIiJs09CpmQ?si… @WouterSchievink @spinalCSFleak #2025SSsymposium

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SSRA | Living with SS Retweeted

WouterSchievink@WouterSchievink · Jun 12

An unforgettable evening with patients caregivers and physicians passionate about solutions for superficial siderosis. Humbled to meet the giants of SS care #ProfessorDavidWerring and #DrMichaelLevy ⁦@Harvard⁩ Loeb House ⁦@LivingwithSS⁩ ⁦@spinalCSFleak⁩

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SSRA | Living with SS@LivingwithSS · Jul 8

Inside the 2025 Research Roundtable: How Scientists, Clinicians, and Patients Are Charting a New Course for Superficial Siderosis ssra.livingwithss.com/blog/inside-th… #Neuroscience #neurology #biobank #superficialsiderosis

LivingwithSS's tweet card. members gathered together at the research roundtable and set out to answer a deceptively simple question: What has to happen next so we can finally slow, stop, or even prevent superficial siderosis...

SSRA | Living with SS@LivingwithSS · Jul 2

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

LivingwithSS's tweet image. 2025 Superficial Siderosis Symposium Keynote Speaker Michael Levy MD, PhD Superficial Siderosis Clinic and Research Lab MGH #2025SSsymposium

SSRA | Living with SS@LivingwithSS · Jul 1

#hematology Dr. Philip Haddad clinical care presentation Monitoring and Managing Chelation Therapy in Superficial Siderosis youtu.be/cIiJs09CpmQ?si… #2025SSsymposium #chelation #superficialsiderosis

SSRA | Living with SS@LivingwithSS · Jul 1

Keynote speaker Dr. Michael Levy, Superficial Siderosis Clinic and Research Lab @MGHNeurology Superficial Siderosis youtu.be/cIiJs09CpmQ?si… #2025SSsymposium #neuro

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SSRA | Living with SS@LivingwithSS · Jul 1

Prof David Werring, UCL Queen Square Institute of Neurology - Importance of Multidisciplinary Care in superficial siderosis, Dr Natallia Kharytaniuk, specialist in audiovestibular features of superficial siderosis youtu.be/D76gA6bUIf4?si… #2025SSsymposium

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SSRA | Living with SS@LivingwithSS · Jul 1

The 2025 Superficial Siderosis Symposium was one for the books! Check out our photo gallery: ssra.livingwithss.com/2025-symposium… #SuperficialSiderosis #symposium

LivingwithSS's tweet image. The 2025 Superficial Siderosis Symposium was one for the books! Check out our photo gallery:
ssra.livingwithss.com/2025-symposium… #SuperficialSiderosis #symposium

SSRA | Living with SS@LivingwithSS · Jun 17

The Superficial Siderosis Research Alliance (SSRA) Mission youtu.be/ry0TQbNxNz4?si… via @YouTube #SSsymposium2025 #SuperficialSiderosis #raredisease

SSRA | Living with SS@LivingwithSS · Jun 7

The viewing links for the 2025 Superficial Siderosis Symposium #neurotwitter #neurology #neurorad

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SSRA | Living with SS@LivingwithSS · Jun 2

Ask the Experts: Superficial Siderosis Q&A Panel livingwithss.com/ask-the-expert… via @@LivingwithSS

LivingwithSS's tweet card. If you've ever wanted to ask a leading neurologist or medical expert a question about superficial siderosis, this is your moment. On Thursday, June 12

SSRA | Living with SS@LivingwithSS · Jun 3

Ask the Experts: Superficial Siderosis Q&A Panel livingwithss.com/ask-the-expert… #symposium2025 #neurology #clincalcare

SSRA | Living with SS@LivingwithSS · Jun 2

Registration for the Superficial Siderosis #Symposium2025 remote viewing link at ssra.livingwithss.com/blog/event/sym…

LivingwithSS's tweet image. Registration for the Superficial Siderosis #Symposium2025 remote viewing link at ssra.livingwithss.com/blog/event/sym…

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SSRA | Living with SS@LivingwithSS · Jun 2

Superficial Siderosis Symposium Registration for remote: ssra.livingwithss.com/blog/event/sym…

SSRA | Living with SS@LivingwithSS · Jun 1

LivingwithSS's tweet card. Requests for a remote viewing link may be made up to the day of the event.

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SSRA | Living with SS@LivingwithSS · May 21

Symposium 2025 Countdown Closed caption available in five languages #superficialsiderosis ssra.livingwithss.com/blog/symposium….

LivingwithSS's tweet card. As we move into the final weeks before the first Superficial Siderosis Symposium, excitement is building across the SSRA community and beyond. What began as a

SSRA | Living with SS@LivingwithSS · May 20

ssra.livingwithss.com/blog/symposium… #superficialsiderosis #csfleak #ataxia #hearing

SSRA | Living with SS@LivingwithSS · May 20

The Inaugural Superficial Siderosis Symposium is coming this June. Join researchers, clinicians, and patients as we unite for the first time to advance SS care and research. Remote viewing is available: DM your email for access.#symposium #SuperficialSiderosis #csfleak

LivingwithSS's tweet image. The Inaugural Superficial Siderosis Symposium is coming this June. Join researchers, clinicians, and patients as we unite for the first time to advance SS care and research. Remote viewing is available: DM your email for access.#symposium #SuperficialSiderosis #csfleak