Virtual Walk


Total Donated:



Suzan Morris
Catherine Wakely



Though investigations are ongoing, the current line of thinking is that along with a slew of other diagnosis' I have PNKD. I was paired with my service dog, Savanah 6 years ago (the beginning of the month). She is a hearing dog who started picking up on episodes I was having and did not know what they were only a few months after being paired. I am a single mother of a special needs daughter, as well. I got her to alert me to sounds my daughter makes that I can't always hear. She has been a life changer for our family. Because she was picking up these episodes and sometimes it stressed her out, we made the decision to mold those alerts into a task and response for ours and her sanity. And that has been a massive help to our family. It was not till this past year I had a doctor I trusted with the abnormal movements I was experiencing because of horrible treatments I had received in Emergency departments several times, throughout my life. I was afraid to disclose what was happening even to him, but he was witnessing my declining health and an episode. He was one on only a handful of incredible doctors I have had in my life and I will be forever grateful for him. I have a few rare disease diagnosis' and the funding for future research and treatments is not just necessary it is often a matter of life and death for patients. So I want to do what little I can. This is my Savanah, my heart dog.

Accelerating Research & Inspiring Hope

The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.