Cure4Ed Save the Date

Dear Family and Friends,

It’s been a while between fundraisers and with our beautiful boy turning 7 in July we have so much to be grateful for and an even better excuse to celebrate so wanted to touch base with some dates for your diary. Can you tell I’m on University Holidays?

Friday 7th of July Despicable Me 3 Screening: 10:15 at Cremorne Orpheum

Unfortunately we are no longer able to get an afternoon screening which I know would work much better for those working through the holidays but this time was the best I could and Isabel was so keen to celebrate her brother’s birthday with our annual July movie screening.

Tickets can be purchased via: www.trybooking.com/QTEX

All proceeds from the screening will go to Arranounbai Special School.

Sunday 27th of August Pub2Pub

Yep once again some will run, others will walk and stroll in the beautiful winter sun along the northern beaches.

All proceeds from our walk will got to Bear Cottage.

Sunday 17th of September:  Family Fun Day at Balgowlah Heights Bowling Club 

Hopefully by September the weather will start to warm up and it would be so lovely to bring our family, friends and community together with some beers, bowling and market stalls.

This event is not designed to put extra stress on anybody but an opportunity to celebrate. If you feel like you would like to get involved and run a stall on the day then please let me know by the end of July if you’re interested. Your stall could be food, cake, lollies, music, craft, second hand books, clothes toys, activities for the kids, the list endless and we are open to any suggestions. Once we know what sort of stalls we’ll be holding then we’ll be putting up a call for donations and assistance for helpers on the day.

You would just need to let me know before the end of July of the stall your proposing and turn up on the day with you’re gear and a willingness to celebrate.

The proceeds for this event will be spilt evenly between Bear Cottage, Arranounbai Special School and the Australian Niemann Pick Foundation.

On the home front, it’s been a fairly stable year for our boy so far this year with few hospital admissions and not too much further degeneration. He is still managing school all day, everyday, except when he’s in hospital. I even think on his last hospital admission at the end of last term we were discharged on Thursday evening and he made it back to school for the final day of Term 1.  Such a determined tough little guy who never ceases to amaze me, pretty much daily.

I too have had a really good first half of the year continuing on with university studies, strengthening my yoga practice and beginning mindful meditation. All of which have  been a really interesting and useful path to travel and certainly helped to improve both my physical and mental strength.

In the meantime, get those dates in your diary, ideas together for those interested in holding stall at the Family Fun Day, and  enjoy some pics…………

Pub2Pub Fundraising UpDate

A very big thank-you to all those that ran, walked, talked, minded children, supported, sent warm wishes for todays Pub2Pub and also at other times. Our family is truly grateful for the amazing support we receive from family and friends. An extra special thanks to Jo Quarrell,  Joanne Allen,  Niamh Collins,  Alyson Cooke,  Natasha Gennusa, Nicola Sharp,  Julie Ellen Meynell,  Yvonne Hollis,  Nicole O’Donnell,  Stephanie Hopkins,  Kym Parrish, Dianne and Malcolm Stacey and Darren Quarell. It’s days like today that certainly help to smooth a sometimes rocky and challenging road.

In total the Cure4Ed team raised just over $700 for Bear Cottage.

 

Here are a few pics from todays which was an absolutely beautiful day:IMG_1160

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Cure4Ed does the Pub2Pub 2016

Hi there this is the first and only plug I promise but tomorrow morning our family (less Tom) and a group of friends from the St Kierans community will be participating in the Pub2Pub run (well okay walk). This year we’re raising funds for Bear Cottage so please follow this link if you would like to donate.  I’m very, very conscious of Fundraising fatigue and feel supported in so many ways by our beautiful family and friends so please don’t feel compelled to donate, just really wanted to share our movements as this year our brave little guy will be participating in the 3km walk with Pete and Isabel.

Our family is inspired by the work of Bear Cottage and truly grateful for the care and support they provide to Ed and our entire family. We want to support them by raising money as part of my participation in Pub2Pub 2016. Please help me us them by…
PUB2PUB2016.EVERYDAYHERO.COM

Cure4Ed in the Pub2Pub

If anybody is interested in joining us in leisurely 12.7km stroll from Dee Why to the Newport Arms next Sunday 28th August I’ve just registered a Cure4Ed team in the Pub2Pub. Theres also a shorter 3 and 6km course for the kids. I know its late, but if you register by tonight they’ll post the bibs out, otherwise they can easily be collected on the day.  Nothing like leaving it all to the last minute.

 

This year it finishes at the newly refurbed Newport Arms which should be a fun way  to spend the afternoon.

 

More details:  https://pub2pub.fusesport.com/

 

Bear Cottage Super Hero Week

Super Hero week commences this week and we were fortunate enough to celebrate the launch up at Bear Cottage yesterday.

Couldn’t resist sharing these pics with you all .

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It seems there’s a correlation between Super Hero’s and weather  as we’ll be up at Bear Cottage early tomorrow morning for Channel’s Sunrise Breakfast program who’ll be doing the weather  cross from up there. It could be a case of blink and you’ll miss, but I’m sure if our little guy has his way he’ll make sure he’s centre stage with that gorgeous smile of his. We’ll be sure to share  for sure if it’s worth it. In the meantime, here’s the link to a clip from last week’s Channel 10 with Tim Bailey- it’s about the 3 minute mark. Unfortunately I can’t embed video into this blog…..enjoy!!

http://www.snappytv.com/tc/2404347/1230899

 

 

 

 

BFG Screening Fundrasing Update

With the week of birthday celebrations over we’re now relaxing up at Shoal Bay enjoying some family time. I’ve come up for air and very proud to report that last week’s BFG screening raised almost $3 000 which is an amazing effort. This money so generously donated allows us to purchase a $1500 reclining chair on behalf of Bear Cottage for Edwards’s use at home, and $650 each to Arranounbai Special School and to the Australian Niemanm Pick Foundation for medical research.

 

We are extremely grateful for the generosity and support of everybody involved in making the screening possible including those that attended, minded children, bought raffle tickets and donated prizes. I would like to make a special mention to the following people who donated the raffle prizes: Pauline and Terry McCabe, Fiona Kenny, Peter Thomson and FDC Building, Anita Quigley, The Roges Family, Lindy Kurver, Linda Raines, Angela Jackson and Kirsty Thorpe. I would also like to make a very special mention and a big thank-you to Nicole and Maddie O’Donnell who organised the ticketing on the evening.

 

These events are so important to our family on many levels, not just for the funds raised but it also reminds us of how lucky our family is to be surrounded by the love, support and friendship of our family, friends and community. On the morning of the movie screening this is what I overheard Isabel explaining to Edward as she was brushing his hair: “ Eddie we are one of the luckiest families I know. This afternoon we’re going to the movies with lots of our family and friends all in the one place with our own private cinema- that’s going to be super fun”.

 

Many thanks for your support we truly feel blessed to be surroundered by such warmth and generosity and as always we continue to be amazed by the kindness of the human spirit when the road rough and the challenges great- thank-you!!!

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Arriving at the Cinema

Early Bird Tix for THE BFG Screening close this Sunday

With just a week to go, the early bird tix for Cure4Ed fundraising screening of The BFG at Cremorne Orpheum next Thursday 7th of July close this SUNDAY, yes in just 4 days. This is so that I can confirm the numbers and secure a private screening of the film. You may of course purchase tickets after this date but all tickets will incur an additional fee of $5 of the original price.

No worries if you can’t make but would like to show you support why not purchase a donation movie ticket? http://www.trybooking.com/LZGR

THE BFG Box Office is now open

Cure4Ed movie screening of BFG at Cremorne Orpheum on Thursday 7th of July Box office is now open. Tickets can be purchased at

http://www.trybooking.com/LZGR.

Can’t make but would like to donate there’s also the option of donating a movie ticket or just purchasing raffle tickets. Many thanks to those who have donated raffle prizes but we’re still open and welcome to donations until Monday 27th of June.

Movie Screening and a call for donations

Yes, it’s been a long time since I’ve been on the blog I know but it’s definitely time. To be honest we’ve been concentrating on living  in the moment and enjoying life day to day  since there’s no denying the lights are certainly dimming on our little guy as he’s moves closer to the end of his journey than the beginning.

As part of our little guy’s 6th birthday celebrations we’re holding a fundraising screening of Roald Dahl’s BFG on Thursday 7th of July at 3:00pm in the Cremorne Orpheum.

The proceeds from this event will be shared between Bear Cottage, Arranounbai Special School and a medical research project for the Australian Niemman Pick Foundation- 3 special places who offer amazing help and assistance to our little guy. We’re hoping to purchase a reclining chair with wheels for Bear Cottage worth approximately $1500 and the remaining balance to be split evenly between funds for a school bus for Arranounbai Special school and a medical research program for an NPC treatment drug.

The movie booking link should be up in the next day so watch this space,  but in the meantime I’m looking for donations for the raffle. It may be toys, food, wine, experiences for kids, adults or families- no gift too large or too small, anything and all will be gratefully accepted. Please let me know by  next Monday 27th of June of anything you may be able to donate towards the raffle.

As always we are extremely grateful for your support which is given to our family in so many different ways and hope you can join in the birthday celebrations in some way.  After all how could we not organise a fundraising event for our Bear Cottage Super Hero week pin up boy?

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Cure4Ed Pub2Pub for Treatment Drug

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Hi there,

As you may have seen recently the president and founder of the Australian Niemann-Pick Foundation Mandy Whitechurch along with Kellie Adams (another NPC Mum) have been invited to attend the International Niemann-Pick Disease Alliance Conference to be held in Germany in October this year. This is an amazing opportunity to hear and contribute to the most up-to-date information about NPC clinical trials, scientific developments and patient organisation activities from around the world. Of special interest is the clinical trial of a treatment drug, Cyclodextrin which has shown some very promising breakthroughs in the USA, Europe, South America and Japan.

 

It is hoped that Mandy and Kellie, along with the support of Professor Mark Wolterfang, an Australian based Neurologist with a special interest in NPC will be able to access and bring this trial of cyclodextrin to Australia so that patients like Edward will have the opportunity to benefit from this drug which appears to further delay the onset of NPC symptoms.

 

It is estimated that this 3 day conference will cost approximately $5000 for Mandy and Kellie to attend which would include flights, accommodation and conference registration. I am hoping that we may raise a good proportion of this through our Cure4Ed Pub to Pub to running team which is a running on the 23rd of August…..yes I know just 10 days away.

 

I’m more than aware of fundraising fatigue and hesitant to ask again for support but if you are in a position you may be able to assist either by sponsoring one of our team members by clicking here:

https://pub2pub.gofundraise.com.au/payments/donate/page/346788

 

Or you are more than welcome to join our team and run or even walk the 13.5km which is what I’m planning to do. There is also a 3km short course which Pete and Isabel are participating in and you of course are welcome to join either course length. Check it out here:

https://pub2pub.gofundraise.com.au/cms/reg2015 to register with the Cure4Ed team.

 

There is a large proportion of our team from St Kieran’s Manly Vale, along with some other family and friends who have joined and we would welcome the opportunity it if you would like to join.

 

I ‘m in the process of arranging some caps who have been generously donated by CapsRus (http://www.capsrus.com.au/).

 

If you are able to support then many thanks in advance as we are always ever appreciative of your support but as I have learnt over the last few years it’s not possible to do everything all of the time so no worries if you choose to pass on this one, I am very conscious of fundraising fatigue.

 

As always we are ever appreciative of the love, care and support we receive from family and friends, it certainly helps to smooth the bumps when things get rough.

 

All our love,

 

Ali, Pete, Isabel, Ed and Tom

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