Kyle and Sue Dempsey are the founders of the Superficial Siderosis Research Alliance, Inc., which is a registered 501c3 non profit focusing on medical research for this neurodegenerative condition. They are partners with the website founders Gary and Rori Daniels.

Superficial Siderosis is a slowly progressive chronic neurodegenerative condition due to iron toxicity from persistent subarachnoid bleeding. The human body has a limited capacity to rid itself of blood products in the subarachnoid space, but in ultra-rare cases, chronic or intermittent bleeding over the years to decades eventually leads to overwhelming amounts of toxic iron molecules.

Kyle and Sue are passionate about finding treatment options for this disease because one of the causes of this disease is head trauma. Their son died in a car accident in 2008 and their daughter had a traumatic brain injury in that accident that has led to Superficial Siderosis many years later.

Being an ultra-rare disease, there is very little research or funding for research. The Dempseys decided to partner with the current Superficial Siderosis community and fund our own research for the people that have this condition. Kyle joins H4H Rare Storytellers to educate future physicians researches and allied healthcare professionals through his family’s personal experience. Additionally, Kyle annually attends Rare Disease week in Washington to lobby congress for legislation that impacts the Rare disease community.

Kyle and his wife Sue live near Milwaukee, Wisconsin with their daughter who is a true miracle. Kyle shares his family’s story because it is a way to implement change in the landscape of Superficial Siderosis. The road has not been easy, but the Dempseys are determined to spread the message.

For more information Please visit: https://ssra.livingwithss.com/welcome/about-ssra/