Dina De Sousa

Something about me

  • I am a Huntington’s Disease patient (premanifest/prodromal)
  • I have had sleep issues going back 9 years and fatigue about 3 years 
  • My interests include exercising, travelling, my dogs

Why do I decide to help with IDEA-FAST consortium?

  • After my gene positive test 13 years I slowly learned as much as possible about HD and over the years have gotten involved with raising awareness and patient advocacy. Patients are experts in their disease and can contribute a lot of insight. This study really hit home with me and I was excited to be asked to be part of PSAB

How did you find your role so far?

  • My experience with working as a member of that PSAB to date is inclusiveness and my thoughts and ideas being heard and incorporated into the study.