I call myself an advocate but right now I am just learning my way. Perhaps next year this time I will know the stand I will take as an e-patient fighting for my community for education, research,awareness and support. (Cryoglobulinemia Vasculitis) Once I entered this arena I knew it would be impossible to walk away from the millions of people to sick to fight for themselves.
After reading this story I am empowered by the courage and determination the Hempel family have for what they know is possible. They were novices like myself and possibly like you but they educated themselves, took a stand and never looked back. This is a huge milestone for both the the family and the rare community.
What can we do to make a difference in the rare community? I will continue to ask myself that question until I am clear why my life's path has brought me to this place and I know what I need to do.