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)
Summer Update 2022Medical Alert CardsSuperficial Siderosis Community ForumResearch FundingSummer FundraiserEnjoySummer 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… Read More "Quiet Before the Storm"
Our ProgressOn The Horizon2021 Annual ReportFDA Grant ApplicationOur Progress The Superficial Siderosis Research Alliance was organized during the summer of 2019 and began operations in early October. Our initial fundraising effort began in earnest in November, and we ended 2019 much further than we imagined. We began expanding our educational, organization, and patient registry websites in 2020 to provide a permanent 24/7 resource to our community. In addition, leadership advocated with congressional members during legislative meetings on a federal level. 2021 saw the expansion of our global Superficial Siderosis Patient Registry to go beyond a simple registration site into a full-service clinical research support system. The patient registry implemented a research database with the capability to connect worldwide. In addition, the SSRA rolled out video conferencing for organizational use and patient/caregiver support. Finally, our second education and information brochure for the benefit of the superficial siderosis community was made available on request in US/Canada, UK, and AU versions. The popularity of the brochures necessitated a second printing of the US/Canada version (just delivered), so we are now able to fill requests once again. The second printing of the U.K version is also on the way to the printers. On The… Read More "What’s Happening in 2022"
Game Train USA Driving December SS AwarenessWhy The SSRA Was FoundedAbout Game Train USAGame Train USA Driving December SS Awareness Game Train USA believes by championing local nonprofits and the causes they support is how they can give back to the community in a very big way. We’re proud to announce the Rocky Mountain Superficial Siderosis Research Alliance has been chosen as their featured charity for the month of December. We would like to invite everyone in the Denver area to an SSRA Meet and Greet Event Night, December 10th from 5:00 PM -: 7:00 PM MST. Hosted by Game Train USA and David M. Dickson Jr., Rocky Mountain SSRA Regional Director, you will be able to hear firsthand how this profoundly life-altering condition affects those living with superficial siderosis daily. Why The SSRA Was Founded Also in attendance during the SSRA Meet and Greet evening will be Kyle Dempsey, National President of the Superficial Siderosis Research Alliance. Kyle will share how he and his wife were motivated to help those who are fighting SS. Game Train USA encourages social connections between couples, groups of friends, and families. About Game Train USA Game Train USA’s goal is to provide the… Read More "Games, Trains, and SS Awareness"
WHAT DEFINES A RARE DISORDER?
