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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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 […]
WHAT IF RESEARCHERS COULD IDENTIFY A WAY TO GIVE YOUR BODY A FIGHTING CHANCE? Research takes a very long time, so as hard as it may be to face, even though some of our SS community friends will never experience the benefits, you still have an opportunity to contribute. To make a difference to those who follow with a real […]
