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 […]
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 […]
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. […]
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 […]
Natural History Study Of Superficial Siderosis Knowledge of natural history is essential for developing more efficient clinical trial designs. It also could help reduce the length and cost of drug development and, possibly, contribute toward greater predictability of clinical development programs. -Janet Woodcock, M.D., Director of FDA’s Center for Drug Evaluation and Research (CDER)
