Patient Advocate Spotlight: Mark Rudolph Supports and Connects the Dystonia Community Dakota Campbell Tue, 05/17/2022 - 09:44
Headshot of Mark Rudolph

Mark Rudolph serves as president of the Dystonia Medical Research Foundation (DMRF), a patient advocacy group that supports individuals and families affected by dystonia. The dystonias are a large group of movement disorders causing uncontrollable, sometimes painful, involuntary muscle contractions, resulting in repetitive shaking, turning, and twisting of affected body parts. Here, he shares his journey to rare disease advocacy, impactful work by the DMRF, and collaboration with the Dystonia Coalition (DC).

Patient Advocate Spotlight: Connie Lee Creates Connections for Cerebral Cavernous Malformation Research Dakota Campbell Tue, 10/26/2021 - 09:43
Headshot of Connie Lee, PsyD
Connie Lee, PsyD

Connie Lee, PsyD, is president and CEO of the Angioma Alliance and a member of the Brain Vascular Malformation Consortium (BVMC). She is also a licensed clinical psychologist and the mother of a daughter with multiple cavernous angiomas. Here, she shares her start in patient advocacy, current work, and future goals.