Claudia Volger, mother of Lieven and Sidney, accompanied a slide show with the histories of her two sons’ development of NA symptoms and their subsequent care under Andreas Hermann in Dresden.

Her passionate description of the long roads to both diagnoses was presented from her point of view. We also heard about their participation in Rare Disease Day in February and their hobbies: dancing, roles as extras in TV and movies, music and the arts and working with the epileptic support group.

They have participated in an NA research project for the last year in Dresden. Thank you to the Volgers for joining our Advocacy efforts to finding a therapy and cure for this disease.