June 2014- Latest News

I realise I’m well overdue for an update on our little guy but I cannot proceed any further without posting a belated but very big thank-you to those who were able to support the Cure4Ed Movie Night. This event alone raised just over $5,700, which was a wonderful surprise and well above any of our expectations. The evening would not have been possible without the amazing support and hard work of Nicole Deady organising the sales and ticketing,  Angela Jackson on marketing and PR, Julie Meynell executive in charge of magnums of Champagne and raffle tickets,  and all rounder Sadie Davis.  What a fabulous team achieving such an amazing outcome so thank-you very much to my beautiful friends and of course all of those who were able to support the evening to make it the fun night it was. Since we started on the fundraising trail just 4 months ago back in March, Cure4Ed alone has managed to raise more than $12,000, all of which has gone straight into Australian Niemann Pick Foundation’s quest to raise $120,000 by the end of the year.  This goal is for funding a specific research project which you can read more about at and you’ll be excited to know that already  $60 000 has been sent off to this project so we’re halfway there. Furthermore, our awareness campaign has sparked one of the parents in Isabel’s class to raise funds through her Pub2Pub run (yep you heard right, that’s my sort of start and end point), more details here if you’d like to sponsor In addition to this, Isabel’s school is conducting Spin Classes at St Kieran’s Manly Vale on Saturday 21st of June as a P&F fundraiser and a proportion of the funds will be donated to the Australian Niemann Pick Foundation so there is much to be proud of on that front. Meanwhile, back at the planning table the team are hard at  work preparing for the Family Fun Day which will now be Sunday 26th of October NOT Sunday 14th of September as previously advertised at Balgowlah Heights Bowling Club so stay tuned for further details and calls for help. We continue to be amazed by the generosity and support we receive from family, friends, colleagues, acquaintances and friends of friends.  It’s this support and kindness that often provides the strength and courage to continue on our journey, particularly when the chips are down. image   image image   Cure4Ed Movie Night – Chef Thursday 8th May @ Orpheum Theatre Cremorne   As many of you know and were intimately involved, The Great NPC Bake Off fundraiser at Balgowlah Bunnings in March was a roaring success, raising $2,500 on the day. So to date, with other donations, we’ve raised $5,000 from our efforts.   This would not have been possible without all of you rallying to support the worthy Niemann-Pick Disease Type C (NPC) cause, so thank you.   All money raised so far has gone directly into the coffers of the Australian Niemann-Pick Disease Foundation, which is making a great strides towards its goal of raising $120k by September for research into a prospective new treatment option for NPC disease.   What next? The next event in the social diary for Ed’s friends is a movie night fundraiser. Fancy a relaxing night out with your partner or friends? This is your chance. Just book tickets, turn up and enjoy.   The flick is a new release comedy with broad appeal, Chef. Tickets are $40 each plus booking fee, including a complimentary glass of champagne and lucky door prize.   How can you help? Spread the word. Invite a friend and book your tickets now! Book Now WHAT:  Cure4Ed Movie Night – Chef WHERE: Hayden Orpheum Picture Palace, 380 Military Road Cremorne DATE: Thursday, 8th May 2014 TIME: 7:30pm drinks, for 8:20pm session start (public screening) TICKETS: $40 + booking fee, incl. complimentary champagne and lucky door prize BOOKINGS: CONTACTS: or   Chef (Comedy, 2014) – Cast: Jon Favreau, Robert Downey Jr, Scarlett Johansson, Sofia Vergara, and Dustin Hoffman. A chef who loses his restaurant job starts up a food truck in an effort to reclaim his creative promise, while piecing back together his estranged family. With an all-star cast, CHEF serves up a delectable feast of drama and laughs. Trailer:   Upcoming Events Stay tuned for other fundraising activities. The NPC Foundation has currently raised over $20,000 for the research project and Ed’s family and friends are now stepping up our fundraising efforts. Important dates for the diary:

Follow Ed’s journey at Remember, tell your friends and spread the word so more people find   A VERY BIG THANK-YOU FOR ANOTHER WORLD FIRST Well it seems that once again our little guy is a world first, this time by breaking the Balgowlah Bunnings cake stall fundraising record  by making a massive $2, 500 in cake sales and donations.  Previously the record sat around $1000. This means that in the passed 4 weeks since we began on the Fundraising campaign the Cure4Ed Foundation has raised almost $5500 in total from the Cake Stall, website contributions and other smaller fundraisers from family and friends. This would not have happened with out the amazing support of all of those that baked , donated,  designed artwork, bought,  delivered, minded children, and gave very generously both of their time and money. A very big thank-you to Julie Meynell who was the driving force in the idea and securing the venue along with the help of Angela Jackson and Sadie Davis and assisted on the day by Nicole O’Donnell and Linda Raines to make. We are very overwhelmed by your support and generosity and look forward to many more successful fundraisers. Stay tuned for the movie night scheduled for early April. photo 3

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Saturday 1st March, Balgowlah Bunnings Dear friends It’s game-on for the Great NPC Bake Off and we need volunteers to lend a hand to bake more than a few yummy cakes and goodies. Friends have rallied to organise a cake stall fundraiser at Balgowlah Bunnings on Saturday 1st March. The catch is that we now need to GET BAKING. Our event will raise money for the Australian Niemann-Pick Foundation, which is seeking assistance in raising funds for a specific medical research project. Rare Disease Day is on 28 February, so what better time to raise awareness as well as a few dollars to fund research into Niemann-Pick Disease Type C (NPC). How can you help? We need you to bake like crazy and then drop off your scrumptious homemade treats to Balgowlah Bunnings between 9:00-9:45am that day. Or donate a cake you’ve bought. Save The Date WHAT: Cake stall – selling cakes, slices, biscuits, lolly bags, cookies and other yummy treats WHERE: Balgowlah Bunnings, at Corner Balgowlah Road & Condamine Street, Balgowlah DATE: Saturday, 1st March 2014 TIME: 10:00am to 2:00pm – bring your wallet and send your hungry friends down on the day! Cake Bakers DROP OFF: From 9:00am – please deliver treats at Balgowlah Bunnings front entrance, cake stall PLEDGE: Please place your cake pledge in the comments below DISPLAY: Please bring products ready for sale, either as individual items or whole cake (packaged) REQUEST: No nuts please. Gluten free welcome CONTACTS ON THE DAY: Julie 0410 334 333, Sadie 0425 216 218, Angela 0407 213522 No worries if you cant help this time, just stay posted for other ways you can support the NPC cause as we’re planning a movie night at The Orpheum for early April. Donations can be made via by clicking DONATE NOW. Did you know? There are fewer than 15 Niemann-Pick Disease Type C patients in Australia. Worldwide, only 500 people have been diagnosed with NPC. The value of shining a spotlight on this rare disease can’t be underestimated. Find out more at Tell your friends and spread the word. Talking about it will help more people know about NPC.

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