Summer Update 2022

Unbelievably we’re about to begin the second half of 2022 already. If you had a chance to look through our 2021 Annual Report, you might be familiar with the SSRA plans for this year. So it seems the perfect time to let everyone know about our progress with a summer update on what’s happening behind the scenes.

Medical Alert Cards

The new Superficial Siderosis Medical Alert ID cards will begin mailing out this week. The front side identifies the patient as having been diagnosed with the rare neurological disorder, superficial siderosis. The back side contains space for emergency contact and personal info along with a scannable QR code link to a page on the SSRA website with information written for medical professionals. This card is available to all Superficial Siderosis Patient Registry Members.

Superficial Siderosis Community Forum

While the popularity of social media has shown us a way to connect globally with those diagnosed with superficial siderosis, you might be surprised how many SS patients do not have a Facebook account or any social media. The Superficial Siderosis Community Forum is an online social network created by the SSRA with the singular goal of connecting patients, caregivers, and families affected by superficial siderosis.
– Community Forum Launches, Living With Superficial Siderosis

The discussion forum is housed on the SSRA website to allow patients, caregivers, and family, both public and private spaces, to discuss the topics important to everyone. We look forward to building a solid support community! We invite you to register today.

Research Funding

Our application for funding to the FDA under Efficient and Innovative Natural History Studies Addressing Unmet Needs in Rare Diseases (R01) Clinical Trials Not Required was submitted on February 15, 2022. This grant is highly sought after and had almost 80 applicants with only five awards during the 2021 funding cycle. As with most government agencies, the decision process is a long nail-biting process.

Once an application has scored well in peer review and is being considered for funding, the IC reviews the application for several other considerations, including alignment with FDA/NIH’s funding principles, review of the project budget, assessment of the applicant’s management systems, determination of applicant eligibility, and compliance with public policy requirements. In anticipation that an award may be made, the applicant may be asked to submit additional information. On June 2, the SSRA received a request for completion of a pre-award risk assessment and an audited financial- due on June 9. This request left us seven days to find an auditor willing and able to complete the task in six days. (If you’re wondering, this process typically takes 4-6 weeks). We were successful and were able to submit our 2021 Audited Financial Statement on time.

We ask you to keep positive thoughts. While we are still not guaranteed we will be one of the lucky few this funding cycle, the request was very promising we are in the running. The pre-award expense to the SSRA has been very significant. Upgrades to REDCap cloud security were over $7,400, and the audit was $6,500. Every penny is worth it if we are one step closer to our research goals.