Age diagnosed: 60
Specialist interest: Clinical trials, public policy
- I am currently a member of the steering committee for the upcoming Nilotinib (NILO-PD) clinical trial acting as the Patient Advocate.
- I’ve been a panel member for multiple conferences and webinars, discussing topics such as 1) drug research; 2) supplements; 3) everything you want to know about PD but forgot to ask; 4)exercise and activity, etc.
- I’ve been an active ambassador for Fox Trial Finder and have helped in patient recruitment for numerous trials.
- I’ve testified in front of a FDA panel discussing the need for new and better treatments for Parkinson’s Disease.
- I’ve recently participated in a conference/presentation with the FDA, NHI and members of the pharmaceutical industry on methods to utilize patient generated health data in clinical research.
- I’ve consulted to pharmaceutical companies on their patient-centric goals and policies.
- I serve on the advisory council for two pharmaceutical companies that manufacturer and research PD drugs.
- I am a member of the advisory council for PatientsLikeMe, the largest personalized health network in the world, which included over 17,000 members with Parkinson’s Disease.
- I recently been asked to write the Afterword for a new book on Parkinson’s research and clinical trials, which will be published in the beginning of 2018.
What is the one thing you want to change in the world?
- “This is difficult as there are many changes I would like to see. If I need to choose one, I would like to see an end to all of the hate, divisiveness, and killing throughout the world. If I was able to add another, it would be to end hunger for those people starving around the world.”