The New South Wales state parliament is currently holding an inquiry into the NDIS and disability in NSW. They want to hear about peoples experience with the NDIS and we encourage people with MND to share their experiences. Whether you are having a good experience or a bad one, we all need to make sure our voices and stories are heard. The closing date for submissions is Thursday 9 August 2018. The inquiry
Researchers will be recruiting 90 people across NSW, QLD, SA, WA and VIC who meet the criteria for enrolment to participate in the TEALS Study - a multi-centre Phase 2 clinical trial to investigate the safety, tolerability and effectiveness of a drug called Tecfidera in people with MND (The study to Assess the Efficacy and Safety of Tecfidera in Patients with Amyotrophic Lateral Sclerosis - TEALS, Study ID ACTRN12618000534280).
Researchers are currently recruiting people from QLD, SA and WA who meet the criteria for enrolment in the Study to Evaluate Efficacy, Safety and Tolerability of CK-2127107 in Patients With Amyotrophic Lateral Sclerosis (ALS) (FORTITUDE-ALS) (Trial ID NCT03160898). This is a multi-centre Phase 2 clinical trial investigating the safety, tolerability and effectiveness of a drug called reldesemtiv (also known as CK-2127107) in people with MND.
2018 has already seen many community events held across NSW and ACT. Special thanks must go to each and every organiser who gave so generously of their time to raise funds for MND NSW and awareness about MND. Thank you to the following supporters:
Another wonderful Walk to d'Feet MND completed, our first in Penrith and what a fantastic result. Over 400 participants and currently $30,514 raised. Thank you Penrith. What a lovely venue, fantastic atmosphere and a very enthusiastic crowd. A big thank you to Kath Cavanagh and Team Jean for their wonderful support for this event. Thanks to Rod, Murray and Milton for their great music, the Rotary Club of Penrith for the yummy food and Mel from Cafe2U for the amazing brews. Last but certainly not least a big thank you to our wonderful volunteers and to everyone who came and supported us today. See you next year, we will certainly be back.
