Today marks the beginning of our Spotlight on Superficial Siderosis Week, a special time to raise awareness, share valuable resources, and shine a light on this rare neurodegenerative disorder. We at the Superficial Siderosis Research Alliance (SSRA) are thrilled to kick off this week by announcing an exciting development many [...]
Read MoreWe're excited to announce the 3rd Annual Trail Grinder Run, Sponsored by Caffe Crema and benefiting the Superficial Siderosis Research! The event will happen on Saturday, September 28th, at the Atlanta MTB Trail in Atlanta, Texas. It will offer a choice of 5K, 10K, and 30K runs—something for everyone, from beginners to [...]
Read MoreEmpowering Voices: Advocacy and Awareness on Rare Disease Day Rare Disease Day is a powerful platform for advocacy and awareness, empowering the voices of those living with conditions like Superficial Siderosis. By sharing stories, fostering community connections, and advocating for policy changes, the rare disease community can effect meaningful progress [...]
Read MoreBy Jeffery Newholm A conversation with Wes Hale, rare disease warrior As February, Rare Disease Month, nears its conclusion, the crusade against Superficial Siderosis is taking another turn towards the checkered flag. Below, Wes describes his fight with an out-of-tune medical system that was not prepared to diagnose, let alone [...]
Read MoreDoes Ferroptosis Hold the Answer? In the shadows of neurological disorders lies superficial siderosis, a condition that silently wreaks havoc on the brain and spinal cord. The culprit? Iron. Its accumulation triggers reactions that mercilessly damage cells, leading to a cascade of symptoms that strip away hearing, disrupt thought, and [...]
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Summer Update 2022 Unbelievably we’re about to begin the second half of 2022 already. If you had a chance to look through our 2021 Annual Report, you might be familiar with the SSRA plans for this year. So it seems the perfect time to let everyone know about our progress with a summer update on what’s happening behind the scenes. […]
The Superficial Siderosis Research Alliance is pleased to announce the appointment of Natallia Kharytaniuk MB BCH MRCS(ENT) MRCS(I) MCH, a clinical doctoral research fellow at the Ear Institute, University College London, UK, to the SSRA Medical and Scientific Advisory Board. Dr. Kharytaniuk’s background is clinical; obtaining her medical degree with second-class honors at the National University of Ireland, Galway. She […]
Our Progress The Superficial Siderosis Research Alliance was organized during the summer of 2019 and began operations in early October. Our initial fundraising effort began in earnest in November, and we ended 2019 much further than we imagined. We began expanding our educational, organization, and patient registry websites in 2020 to provide a permanent 24/7 resource to our community. In […]
The Superficial Siderosis Research Alliance is pleased to announce the appointment of Professor David Werring, FRCP Ph.D. FESO to the SSRA Medical and Scientific Advisory Board. Professor Werring brings a rich experience into research and clinical care of superficial siderosis patients. Professor Werring has published over 300 papers and contributed to several books. He is an editor of the forthcoming […]
Recently our Australian SSRA director Fiona stumbled upon an Instagram photo shared by another rare disease organization. It was a quote from a piece I had written over four years ago for the U.K based charity, The Silent Bleed. This was before Gary and I met Kyle, and an organization like the SSRA was an out-of-reach dream. When I went […]
Earlier this year, the Castleman Disease Collaborative Network reached out to the SSRA with a request to participate in a project meant to develop a well thought out plan rare disease organizations could implement to resolve the roadblocks patient organizations face in trying to gain approval for repurposing of drugs currently on the market for therapeutic use in unrelated conditions. […]
SSRA Leadership 2022 The Superficial Siderosis Research Alliance is pleased to share the appointment of Kelly Morgan to the SSRA Board of Directors. In addition, Ms. Morgan will serve as a member of the Grant Oversight Group and Board Member-at-Large. Following the appointment of Ms. Morgan, the Board will comprise ten directors. “We are pleased to welcome Kelly Morgan to the SSRA Board,” […]
Game Train USA Driving December SS Awareness Game Train USA believes by championing local nonprofits and the causes they support is how they can give back to the community in a very big way. We’re proud to announce the Rocky Mountain Superficial Siderosis Research Alliance has been chosen as their featured charity for the month of December. We would like […]
Caregiver Assistance The NORD Respite Program provides financial assistance to allow caregivers a break to attend a conference, event, or simple day out. Financial assistance is offered as a grant of up to $800 annually for those who qualify. A first-of-its-kind assistance program, this grant is designed for caregivers of someone diagnosed with a rare disorder. We all understand how […]
The Superficial Siderosis Research Alliance is pleased to announce its membership application to EURORDIS, a federation of patient organizations and people active in rare diseases was recently accepted by the EURODIS Board of Directors. By becoming a member of EURORDIS, The SSRA reaffirms its commitment to provide research support to all superficial siderosis patients, no matter where they may currently reside. Due […]
