If you are from a family with familial MND and there is a known genetic fault in the family, you are invited to participate in an interview with researcher Ashley Crook from Macquarie University who is undertaking a study investigating experiences of familial MND, receiving genetic information, and any subsequent decisions made such as whether to speak to a genetic counsellor or to have genetic testing. It is hoped that information from this research can guide the MND care and genetic counselling community on best practice guidelines for familial MND. See here for more info.
After heavy rain all night, we prepared ourselves for the worst, but Mother Nature was kind to us with the early morning dawning bright and dry. This was the fourth Walk to d’Feet MND held in the Illawarra and the Illawarra showed up in their hundreds, lots of smiling faces and panting puppies. Our Walk to d’Feet MND events attract some large family groups and the Illawarra Walk was no exception, with groups of 25 and 30 people there to show their support for people living with MND, or to remember a loved one who has died from MND. Thank you to everyone
In a paper published online on 22 February in the Scientific Journal Neurology, MND researchers announced results of study (45 controls and 54 people with MND) evaluating whether a urine test for the protein 75ECD (p75ECD) could be used for prognostic and disease progression application.
The researchers, including Dr Mary-Louise Rogers from Flinders University, South Australia, found that urinary p75ECD did change over time, increasing as disease progresses and motor function declines, even for people with slowly progressive disease.
You can read the full paper free online here http://dx.doi.org/10.1212/WNL.0000000000003741