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.
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.
The technical storage or access that is used exclusively for statistical purposes.The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.