Ed's Daily Progress

Many Thanks for Supporting the Cure4Ed Minions Screening

I would like to thank all of those who came along to support our Cure4Ed Movie night screening of The Minions. In total we raised around $4000 with $3, 100 going to the Australian Niemann Pick Foundation and $600 to Arranounbai Special school, two very special organisations that assist our Edward.

Some of you may already know that the Australian Niemann Pick Foundation is currently supporting a specific research project being conducted at The Howard Florey Institute in Melbourne. Despite making great progress both with NPC and related Alzeimer treatments the project is relying solely on the funds raised by approximately 5 or 6 families in Australia who are affected by NPC. The project has been close to being halted on a number of occasions, and it’s nights such as these that ensure the research continues. This night alone should secure another few months of research, and this is how close to the wire it is operating. More information can be found: http://npcd.org.au/create/category/npcd-research-updates/

Once school returns I will be in touch to let you know exactly how the Arranounbai Special School will spend it’s $600.

On a personal night, it’s events such as these that remind us of just how supported our family is and how lucky we are to be surrounded by this. It certainly gives us strength and helps smooth the journey for the bumpier parts. For me, it feels so great to be organising something so positive and fun for our little guy and the joy to brings not just to him but all that participate. The events of early May were definitely a stark reminder of how important this is are to our family.

Congratulations to the raffle winners:
Magnum of Moet: Angela Jackson
Flip Out Voucher for 2: Jaqui Manning
Minion Packs: Sainsbury Family, Madeleine O’Toole
Smiggle Packs: Terence Malone, Mel Skarf

All of the above prizes were generously donated by Georg at Moet Hennessy, Flip Out Brookvale, Smiggle Australia and The O’Donnell Family

I would also like to say a very massive thank-you to Nicole and Madeliene O’Donnell for their help and support, especially with regards to the ticketing. I’m sure you’ll all agree that it was a very smooth and well organised registration process.

Moving forward, now that the funds have been banked, pizza and popcorn settled it may be time to think about joining the Cure4Ed Pub2Pub team. Early bird discount registrations close this Sunday 5th of July and if you’d like to walk or run with our team, then start here: http://pub2pub.gofundraise.com.au/page/AliMalone

As I’ve written before we are often overwhelmed by the generosity of the human experience in difficult circumstances and last night was no exception- thank-you all so much for the generosity and support,

Warm regards,

Ali, Pete, Isabel, Ed and Tom