Karen Raphael

I’ve lived as a PwP for about 8 years and shared with my siblings in the care of my father who also had PD. He passed away two summers ago at age 91. At age 63, I am still working f/t as a Professor and Clinical Research Scientist, in an area unrelated to PD. I hope that my training in epidemiological and clinical research can help others to understand how the clinical research literature can be translated for personal use (or not).

I first became deeply symptomatic and unable to take a single step, trekking toward Everest Base Camp about 8 years ago. Since that day, I never again felt ‘okay.’ Even in my early 20’s, I had experienced hour-long episodes of bradykinesia. So I consider myself a weird young/older onset Person with Parkinson’s.

When not working very long hours or doing prolonged endurance exercise every day (working for neuroplasticity!),  I hang out with my partner/spouse in Brooklyn, NY,  with my older son and two very old and happy dogs.

Sara Riggare

I live in Stockholm, Sweden with hubby, 15 year old daughter and our two cats. I experienced the first symptoms of Parkinson’s (PD) in 1984, when I was 13 years old and now I combine my engineering skills with my patient experiences to help myself and others with chronic diseases. Currently, I am working to complete my doctoral education at Karolinska Institutet in the area of self-tracking for PD. I was an ambassador for the World Parkinson Congress (WPC) in 2013 and 2016 and am co-chairing the Patients Advocates Committee for WPC 2019. I am also an advisor to the conference Stanford Medicine X and a member of the British Medical Journal’s Patient Panel. Read more on my blog: www.riggare.se.