AE is a serious medical condition where the immune system attacks the brain, resulting in impaired brain function. AE can produce a wide range of neurological and psychiatric symptoms and can be life threatening if not diagnosed and treated appropriately with first-line therapies like steroids, IVIG and plasmapheresis and sometimes second-line therapies including Cellcept, an immunosuppressive drug, Cytoxan, a chemotherapy drug, and Rituximab, a cell-targeted antibody injection. When treated, more than 80 percent of patients with autoimmune encephalitis eventually have partial or complete recovery. However, on average, autoimmune encephalitis patients can take more than a year of treatment to recover, and relapses can happen. Because Duke is one of the few pediatric centers treating this disease the family must travel from their home in Indiana to North Carolina on a regular basis, incurring travel expenses on top of mounting medical costs.
The past six years have been extremely difficult for the Halberts as they have struggled to identify this mystery disease and find appropriate medical care for their daughter. Now the family faces a long battle against AE. People have asked us what they can do to help, and that’s why we’ve set up this page. Please join Rory’s team. Lend support during her recovery by donating here and sharing her story on social media to to raise awareness for AE.
With great thanks, Kathy O’Leary and Amy Claus
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- Thomas Fox
- Thomas Fox
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