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.
This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 853981. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and PARKINSON’S DISEASE SOCIETY OF THE UNITED KINGDOM LBG.