Superficial Siderosis research is an overlooked and severely underfunded area. Documented cases have been so rare it wasn’t too long ago there were less than 270 diagnosed cases worldwide, but that seems to be changing. The symptoms mirror so many other disorders it is sometimes misidentified as Multiple Sclerosis or Parkinsons.
The Superficial Siderosis group at Johns Hopkins has ongoing clinical research. The FDA has granted permission for the off-label use of Ferriprox for treating patients with Superficial Siderosis thanks to the efforts of Dr. Levy and his research partners. Apo Pharma provided a small grant to offset some of the cost of the pilot study, but when funds ran low, Dr. Levy covered the remaining costs himself.
This research is vital so the neurodegeneration will be stopped and everyone can look forward to a better quality of life. This link will take you to the Johns Hopkins donation site. To ensure your donation supports superficial siderosis research please choose the department of neurology as your intended recipient. In the comment section please specify SUPERFICIAL SIDEROSIS RESEARCH, ATTENTION DR. MICHAEL LEVY.
Living With Superficial Siderosis and the entire superficial siderosis community would like to thank you for your gift of hope. Without your support continued research would not move forward.
– Rori and Gary
The Silent Bleed Charity offers awareness wristbands. You may purchase one or a bundle to pass out and help raise awareness
The Silent Bleed group are working toward becoming the face of worldwide Superficial Siderosis awareness. Their site offers information downloads, hosts the “Ask the Specialist” section where you can ask Dr. Levy questions directly and sponsor 5k Fun Walk/Runs. The proceeds from all their fundraising activities help fund continuing research. If you live in a country with an NHS medical system, they are more than happy to offer advice on navigating the system.
Click on the wristband