September is Superficial Siderosis Month
Our annual awareness campaign is a powerful way to raise public interest in the SSRA’s mission and educate all our communities on the nature of superficial siderosis. By setting aside one month a year, we can attract a vast worldwide audience by shining a spotlight on the medical issues our SS family members face.
Our 2022 Message
Our 2022 theme is Educate the World One Conversation at a Time #EducateTheWorld, centering around the simple act of sharing. Share a conversation with your friends and neighbors; share a post or graphic on social media. Tell others about your journey if you’re an SS patient or caregiver; let others know why supporting the SSRA mission matters.
Our network of volunteers has been there for us this year. But, first, we have to give a shout-out to Linda Bongiorno. A Denver graphic artist, she was kind enough to provide us with this year’s campaign logo. Our Colorado Regional Director David has been busy posting the popular “Wednesday Wisdom.” Rhys has created some fresh video content for our YouTube channel and social media. Marybeth will learn through a NORD webinar how Rare Disease patients can share their stories with conventional media. Fiona is handling social media. Finally, we will meet with individual medical advisory board members several times this month to outline our game plan for tapping into FDA funding for our proposed studies and Deferiprone double-blind clinical trial.
2022 Patient Registry Report
Our annual patient registry report is scheduled for release in two weeks. In addition, this year’s report will include the survey results of the Patient Assessment of Care in Chronic Conditions. This survey will help us target the areas of clinical care our SS community feels need improvement in coordination with our medical advisory board.
Medical Advisory Board
We are close to announcing our newest addition to our Medical Advisory Board. Our latest member will bring Australia into our advisory board and allow us to expand our Natural History Study. Hopefully, by winter, we will begin our outreach in Japan. Reports show 100+ identified superficial siderosis patients under clinical care in Japan!
Educate The World
As Kyle is so fond of saying, “Join us” and help us Educate the world one conversation at a time.
