2018 and earlier

The MND NSW e-news June 2018 edition was emailed to members and subscribers on 1 June. You can read this edition here. Get the e-news delivered your inbox by subscribing to the MND NSW e-news.

Thank you to Frances Earl and the wonderful community of Coastal Waters Singles who held a Big Morning Tea in support of MND NSW. The morning included great company, lots of delicious treats and a raffle, raising $1,000. Our thanks to the generosity of everyone who attended.   

Congratulations to Anjelica Karagiannis and her team who set a new fundraising record at Bunnings Kingsgrove with their second bakesale supporting MND NSW! The team raised over $1,400 with lots of lovely homemade and decorated cupcakes, cakes and cookies. Thank you also to Campsie Woolworths who provided their support to the bakesale for a second time. Anjelica shared the following with us, "My team and I are comprised of different backgrounds, experience, skills and ages. A combination of friends and family. What we have in common is our dedication in helping others and supporting causes which affect population, volunteer work, community minded and focused." Anjelica said of the day, "We met many people and families affected by MND. Truly inspirational and amazing to have had them share their personal stories and be able to support them emotionally and in raising funds. Our team is of the belief, it is equally important to connect with, offer support, give hope and raising awareness - not just selling yummy cakes!"

Thank you to the wonderful team at Quakers Hill Veterinary Hospital. This is the third year they have held this great fundraiser for MND NSW. The day included a barbecue, raffle and the sale of MND NSW merchandise, raising $4,000. Looks like a fun day with lots of yummy food.

ALSUntangled reviews alternative and off-label treatments for people with ALS (PALS). Recently, ALS Untangled have reviewed the use of a
class of medications called antiretrovirals (ARVs) for treating ALS/MND (in response to 1400 requests). Retroviruses are a family of RNA viruses defined by their ability to integrate themselves into the host cell DNA. The review found that based on the lack of evidence for use of ARVs in PALS who test negative for human immunodeficiency virus (HIV) and human t-cell leukemia virus (HTLV) they cannot recommend ARVs as a treatment for ALS. They do note that there are two ongoing trials of ARVs in PALS and they look forward to the results. You can read the full paper here https://www.tandfonline.com/doi/pdf/10.1080/21678421.2018.1465248?needAccess=true and find our more about ALSuntagled here http://www.alsuntangled.com/.