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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2021 Silent Auction Let’s be honest. Our annual silent auction would never be the successful event it is without the support of our friends. Every year when our call for auction items goes out, it’s met with love, support, and generosity. With donations now beginning to arrive, our 2021 auction is shaping up to be bigger and better than ever. […]
Antioxidant Supplementation For Enhancement Of Neural Protection From Free-iron Toxicity In Superficial Siderosis Our inaugural SSRA sponsored research project is designed to explore the possibility that boosting brain urate by treatment with an antioxidant will slow the brain cell degeneration of superficial siderosis patients. This project might substantially shorten the time needed to develop a complete neuroprotection treatment plan. Optimizing […]
It’s A Virtual World It’s lobby day for your SSRA advocates! Rori Daniel will be representing the Superficial Siderosis Research Alliance and our SS community during this two-day virtual event. On Wednesday, March 3rd, the SSRA will meet with Senator Ted Cruz and Senator John Cornyn’s offices. On Thursday, March 4th Rori will meet with Representative Pat Fallon and Representative […]
Measuring The Iron When a Two-year observational study on the efficacy of deferiprone1 was released, one finding stood out. Physicians had submitted the participants’ MRIs during several stages of the research; differences in MRI equipment, sequencing settings, and magnification produced data that was difficult, if not sometimes impossible, to compare. MRI sequencing is required to track existing hemosiderin levels characterized […]
Sharing The SSRA Mission
This past year has certainly been an experience as we learned to navigate the waters of virtual events. Everyone is disappointed there will be no banquet this winter, but we hope that 2021 turns the corner so we may again safely enjoy your company. Expanding our 5k fundraiser to include the entire world as a virtual race and transitioning our […]
JX Enterprises is celebrating its 50th anniversary of leadership in the transportation industry. Since 1970, JX has grown to over 1,000 employees in 24 locations offering new & used truck sales, parts, service repair, financing, full-service leasing, truck rental, and graphics services. They understand the importance of giving back to their community through their #JXGivesBack program. Since 2017 they have […]
Saturday morning may have begun at our local community urgent care but it soon turned into a run to the emergency room 65 miles further down the road. Bless my daughter for driving the second leg because the past three weeks have been nonstop blood tests, appointments, and procedures. I’m tired and I know Gary’s feeling the strain. This is […]
Meet Children’s Author, Robert Cameron Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for more than 25 years, Captain Robert traveled the world; Australia, New Zealand, South Africa, Japan, […]
