Superficial Siderosis fundraising will soon go to the next level. Progress is often slow but in the near future tax-deductible donations may be made online through the Superficial Siderosis Patient Registry or Living With Superficial Siderosis website to a United States based 501(c) nonprofit created for the benefit of the superficial siderosis community.
Thanks to the efforts of Kyle Dempsey we will be able to make some noise in the world of rare disease organizations. Once recognized as a U.S. 501(c), we will have access to more opportunities, more resources, and open doors to begin corporate fundraising.
Our next project will be to begin the grant application process through the NIH and FDA so we can fund a natural history study.
You should also consider visiting The Silent Bleed located in the U.K. They have been a superficial siderosis charity pioneering force and their efforts have been mighty. This group of advocates, led by Jason Roberts, have tirelessly worked to raise money for research.
The Silent Bleed Charity offers awareness wristbands and downloadable informational brochures for print. You may purchase one wristband or a bundle to pass out and help raise awareness.
The Silent Bleed website offers information, hosts the “Ask the Specialist” section where you can ask Dr. Levy questions directly and sponsors multiple community fundraisers every year. 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.