NEWS FLASH: Cure4Ed runs the Pub to Pub

I realise I’m extremely overdue for an update on our little guy and also on the fundraising events both past and upcoming but I need to post this immediately.

There’s a group of Mum’s from Isabel’s school who are running in the Pub2Pub Run this Sunday 24th of August forming their very own Cure4Ed Team.

Depending on the health and hospital status of our little guy I myself might give it a shot and enjoy a leisurely Sunday stroll…….trust me it won’t be a run for me.

I know many of you have been so very generous in many ways and I’m aware that a fundraising update and thanks is also well overdue but in the meantime if you would like to support the team you can donate through the link:

I’m hoping to post further on a our little guy and where we are at with fundraising in the next few days, just a little time poor at the moment.


2 thoughts on “NEWS FLASH: Cure4Ed runs the Pub to Pub

  1. Hey Ali , I just saw the run advertised on tv, and now I read your blog. Im always praying for LIttle Ed , he amazes me with his strength in that little body. Hope you have a great weekend, love to all . Kat and Brad are in Colorado , the mountains look so pretty. much love and big hugs Wendy and Phil xoxo

  2. Imight help Ali out a little from an overall picture. Of the fundraising. Team Eddy is striving in fundraising and I am so proud of the ones who have come on board to help Eddy and those alike with NPC including my own two sons, with our goal to finalising this crucial treatment research that is so promising in Melbourne University. I am very very proud and overwhelmed to announce that on the 6th August I attended another research update meeting with the scientists and researchers and presented them with yet another Australian NPC disease Foundation cheque of a further $20,000.00. That brings our whole total donated from hard personal family and friends fundraising efforts since January this year.. That’s on 7 months… To a whopping $80,000.00 contribution. The head of the research and the Scientists together with the financial department of the Florey institute at the. University of. Melbourne are to say the least stunned with the efforts of our foundation. They didn’t truly believe it was a reality to raise such funds in time to continue the research, but we have done it. We have ensured to date, and we still have to continue to raise funds contributing to $120.000 per annum, to bring this research to human trial , which could be about 18 months away, hopefully sooner. I thank you all involved with. Team Eddy for your continued fundraising efforts and ensure you, you are truly making a difference in this, as are the 2 Victorian families involved. Also, I would like to say from another mother to NPCdisease, thank you for supporting Ali. And her family on Eddys journey, moral support and loyal friendship go a hell of a long way, when dealing with your child’s terminal prognosis. Eddy won my heart a few years back when I met him, and it’s easy to see why he and Ali are so loved and supported. Keep up the good work Team Eddy.


    Mandy Jacobs,
    Australian NPC diseaseFoundation Inc
    Mother to two…Mattthew 26 and Timmy 24 , both NPC

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