Discover how the Superficial Siderosis Research Alliance (SSRA) is turning Giving Tuesday generosity into groundbreaking rare disease research, patient support, and advocacy progress. What is Giving Tuesday and Why It Matters for Rare Diseases Every year, after the excitement of Black Friday and Cyber Monday, comes a day dedicated to [...]
Read More1951 – 2025 Uriel Chaim Goldberg, Ph.D., was a gifted scientist, an innovative engineer, and a man of quiet integrity whose final act of generosity will continue to advance the understanding of Superficial Siderosis. Uriel earned his Ph.D. in Physics in 1984, building a lifelong career studying turbulence and fluid [...]
Read MoreRacing Together for Superficial Siderosis Research Every September, the Superficial Siderosis Research Alliance (SSRA) invites our community to come together for the Annual Trail Grinder Benefit Race for Superficial Siderosis, one of the most meaningful events of the year. What began as a local run in East Texas has now [...]
Read MoreHow Scientists, Clinicians, and Patients Are Charting a New Course for Superficial Siderosis On June 13, 2025, the final morning of the Superficial Siderosis Symposium, neurologists, a neurosurgeon, an MRI researcher, a hematologist, a specialist in audiovestibular Medicine, a clinical fellow in neurology, and audience members gathered together at the [...]
Read MoreThe 2025 Superficial Siderosis Symposium Our reception evening on June 11 started with perfect early summer weather. The excitement we felt as SSRA organizers was quickly eclipsed by the arrival of our guests. There was laughter, hugs, and the joy of finally meeting people face-to-face after years of online interactions. [...]
Read MoreLiving With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make sense of two words that had suddenly turned our world upside down: superficial siderosis. Back then, my goal was simple: keep a running journal of Gary’s appointments, the new research [...]
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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, […]
The SSRA 2020 Fall Fundraiser It’s the perfect way to get a jump on your holiday gift-buying and support the foundation – The SSRA Online Silent Auction. This year’s auction will be available nationwide so everyone can get in on the action with a little friendly bidding. From chocolate & wine baskets to pizza parties; autographed footballs to summer […]
Each year, Australian based MyGivingCircle awards $200,000 in Grants to grassroots charities, community groups, and not-for-profits. It’s their way of giving back to the world community. The SSRA participated for the first time this quarter, and we are pleased to announce, with your support, we have been awarded one of the Top Ten Charity grants and an additional MyGivingCircle donation […]
Some say we’ve taken on an impossible task. Tilting at windmills. You’ll never raise the funding. Do you honestly think you’re going to bake sale your way to a cure? My answer is our enemy is real, and it has a name, Superficial Siderosis. We have clear goals; discover a way to stop the progression for everyone, including those who […]
We did it! If you had asked me eight years ago if I would have thought of starting a non-profit, I would not have believed you. Our 14-year-old daughter Mackenzie, was diagnosed with superficial siderosis (SS) in 2012. Born with a congenital heart defect, we had once been more concerned with her heart problems. Now, we are the Superficial Siderosis […]
The Superficial Siderosis Research Alliance (SSRA), a 501(c)(3) nonprofit organization dedicated to supporting Superficial Siderosis research, an ultra-rare disease affecting less than one in one million people worldwide, is pleased to announce they have been accepted for membership into the National Organization for Rare Disorders (NORD) at the platinum level. Platinum level Platinum level Membership represents the highest level of […]
2019 Believe in Hope Superficial Siderosis Presentation Presented by Michael Levy, MD, Ph.D. Associate Professor, Department of Neurology Harvard Medical School Massachusetts General Hospital
Rare disease legislative advocacy is an important step to ensure the voice of the superficial siderosis community is heard. Rare disease week on Capitol Hill allows patients, caregivers, advocates, and rare disease patient advocacy organizations an opportunity to discuss the issues face-to-face with Members of Congress and their staff. To receive first-hand knowledge on federal legislative issues, meet with other […]
The Superficial Siderosis Research Alliance was recently awarded a 2019 Bronze Seal of Transparency by GuideStar. Our up-to-date Nonprofit Profile on GuideStar guarantees the SSRA is committed to open and transparent sharing of our fundraising activities, projects, and financial information. Now our community members, as well as 10+ million GuideStar users, can find out more about our mission and programs. […]
Deciding to Start a Charity is a Tough Decision I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some […]
