What’s Happening

A Whale Of An Idea!

, A Whale Of An Idea!

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,…

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Mark Your Calendar!

Mark Your Calendar!

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…

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My Giving Circle

My Giving Circle

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…

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Our Journey Begins

, Our Journey Begins

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…

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A Message of Hope

, A Message of Hope

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…

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SSRA Announces NORD Membership

, SSRA Announces NORD Membership

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…

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Rare Disease Week 2020

, Rare Disease Week 2020

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…

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SSRA Awarded 2019 Bronze Seal of Transparency

, SSRA Awarded 2019 Bronze Seal of Transparency

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…

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A Tough Decision

, A Tough Decision

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…

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