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Originally Posted by Conductor71
It is sobering to hear a scientist so key to unlocking the mystery of brain disorders basically acknowledge what many patient advocates have felt for some time now. It only reinforces how we would probably make more headway if these diseases were not treated as separate entities but rather on a continuum by both researchers and patients. There needs to be a larger representative foundation focused on as a group. However, there is little tolerance for reality in patients, I find. If you are not optimistic and inspirational every moment you can be shunned in social groups online. Not going to make any progress unless we can change that dynamic.
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Thanks Laura, you are so right about the need for collaboration among the neurodegenerative disorders groups, foundations, organizations and researchers. Maybe the place to start is collaboration among the patients. If we spoke with one voice, we're likely to get better cooperation from the other entities.
There is some movement in this direction with MJFF. They've partnered with the Alzheimer’s Association and The W. Garfield Weston Foundation to create and fund a new research grant program — Biomarkers Across Neurodegenerative Diseases — that will support initiatives including, but not limited to, those that:
- analyze datasets to test hypotheses related to aging and neurodegenerative disorders;
- seek to identify panels or pathways that may play a role in disease mechanisms, such as around inflammation;
- pursue shared or disparate biochemical markers of disease risk, onset or progression;
- or assess potential commonalities across the disease spectrum, including around other neurological disorders such as Lewy body dementia.
It's a start, although there is still a long way to go......