Update to the Huntington's Disease community regarding Project Change: The need to change the diagnostic criteria in regards to HD is more important than ever. Families with HD need to be able to obtain a diagnosis for many reasons including family planning, government benefits along with several other important life choices that many take for granted.
The letter states:
WeHaveAFace has HUBS in the USA, Canada, England, and Germany – all run by unpaid, volunteer-only, patients and families. As you may already know, two years ago we built an international project – Project CHANGE. This project was/is driven by patients and families within the global Huntington’s disease community. If you are unaware of this project, please visit: www.WeHaveAFace.org/ProjectChange
The aim of the project is quite simple – to update the current diagnostic criteria for Huntington’s disease. For far too long, Chorea has been and is still the single most symptom used to diagnose a patient. However, we must listen to our patients and families. Project CHANGE would include psychiatric, cognitive, behavioral, and vegetative symptoms which makes the lives of our patients and families more troubled and in need of a diagnosis. We must make services and supports easily available to patients and families with non-motor symptoms. In most cases of Huntington’s disease, by the time chorea manifests, the disease has already affected the patient with the symptoms mentioned above. After surveying the global Huntington’s disease community, we have compiled inexplicable proof from our patients and families that a change must happen now. You can see the transparent data on our website - (link: www.WeHaveAFace.org/PollResults).
By viewing the detailed project outline, you will also be able to read the comments and feedback from our fellow patients and caregivers. We all can agree that data collection is paramount with any project. However, when you read the feedback from our community, it sends a very strong message to all of us in leadership positions. It is imperative that we underscore that Project CHANGE does not aim to change any diagnostic procedures pertaining to research. Simply, our patients and families wish to be able to receive a diagnosis of HD if in the event symptoms other than chorea manifest and they are no longer able to function in environments as non-HD affected individuals: cognitive, psychiatric, emotional, etc.
Project CHANGE is supported by world-renowned researchers and medical professionals, as well as many Huntington’s disease organizations.
Please see www.WeHaveAFace.org/ProjectChange for more information, to review our data, view international video testimonies of support from many medical professionals and leaders of HD organizations.
Lastly, I request that each of you designate members of your organization to join an online working group of natural and scientific/clinical experts, the same way the guidelines for predictive genetic testing were established 1994 - to establish guidelines for the clinical diagnosis of HD. I look forward to hearing from you."