My Nonprofit Reviews

My story as a carer is so similar to many others, so I won't add much more other than to say, my sister Maureen started showing symptoms at age 54 yrs, the progression was fast, her motivation non-existent, she crawled into a shell & sadly couldn't find her way out & passed away 6 years later, 2 weeks after her 60th birthday. Living in Australia in 2012, so little was known about MSA & like many others she was misdiagnosed with Parkinson's Disease. Like a dog with a bone I became obsessed with Google, looking for answers that doctor's just couldn't give us until a wonderful Parkinson's nurse steered me into the path of The MSA Coalition & said "stick only with reputable sites". I made contact & received a heartwarming response from Vera James who told me more about my situation, than I told her. It was as though a weight had been lifted & someone actually believed me. Vera passed on my details to Pam Bower who invited me to join the MSA Australia/New Zealand Facebook page (which I didn't know even existed). Being able to talk to like minded people, made life so much easier & this is where I found my voice & a platform to raise it. It's now 8 years later & we still only have this dedicated Facebook page in Australia (originally set up by Pam Bower), which is why we rely so heavily on our international friends from The MSA Coalition amongst others to share information from the wonderful & informative webinars to links showing what trials are available or, at what stage they are at. The list goes on with the many downloads available & resources also at hand. I don't know where I/we in Australia would be if it wasn't for the MSA Coalition & their Facebook pages & many others (I think I'm a member of about 20 + in total) from all around the world. To all the volunteers who work at the Coalition & give up so much of their time & in particular my online Buddies Vera & Pam, I/we owe you a debt of gratitude for everything you have done for us & you kept me sane. To say thank you sounds so inadequate so all I can add is "good onya mate/s & cheers from DownUnder"