Like Delaney, Liz, and so many other children and adults with rare diseases, the diagnosis can take years. With NBIA Disorders being a degenerative disease,the need for early diagnosis, treatments, and ultimately a cure, impact families and doctors with a sense of urgency to improve research now. "The clinical 'hallmarks' of NBIA are progressive dystonia, dysarthria, spasticity and parkinsonism. Optic atrophy, retinal degeneration and peripheral neuropathy may be associated features in a number of NBIA syndromes." (retrieved 1/31/16 from http://brain.oxfordjournals.org/content/early/2013/05/14/brain.awt098) We are riding and praying that through support, we can help children and their families know that we care! If you care to find out more about NBIA Diseases and support, please explore http://www.nbiadisorders.org/

Delaney is one girl we met. Meet five year-olds Anna and Dylan. They share love from their first meeting at the NBIA Family Conference. Both girls have the BPAN variation of NBIA (Neurodegeneration with Brain Iron Accumulation), an extremely rare disorder that has no treatment or cure. Both girls suffer from seizures, have severe developmental delays and significant difficulty communicating. Because the disorder is progressive, their condition will continue to worsen.But their friendship has been a salve, not only to the girls but to their families. And they have joined with the NBIA Disorders Association, which is working with researchers to find treatments and a cure for these diseases. Let's join together to help Delaney, Anna, Dylan, and others with NBIA Disorders to improve research in treatment and a cure. Let's Do This Together!!!!