A Long Over Due Fundraising Update and Thanks

[View all the photos over here]

The fundraising momentum continues with another 2 fundraisers since our Movie night in May, both organised without me (can you believe it?) and so a very big thank you is long over due to all of those who organised, participated, donated or supported.

Judy Sharp’s Bridge Day

At the end of July, Judy Sharp (Pete’s Mum ) and her merry band of helpers hosted a Bridge day in the home of Margo Lander who was very kind in opening up her home to 50 card playing ladies. My sister in-law Cathy Vaughan and her daughter Emma Stiles provided the amazing sandwiches and delicious cakes along with some super friendly service I’m told. Ed and I were hoping to make it along but unfortunately we were shacked up in Club WestMed.

Sandwich fillings were planned carefully well in advance with rehearsal recipes, tables, chairs and cards borrowed from Pymble Golf Club and the day was an amazing success raising around $3 800.

Judy Sharp’s Birthday Club

When not playing bridge or golf, or raising money through her Book Club Judy is off lunching with a special group of her friends who have decided to host their birthday luncheons in their own homes and donating the proceeds of what a restaurant bill would have cost them.  In just 6 months they have raised around $1700 so keep on lunching ladies in your homes- its an amazing amount of money to raise.

Pub2Pub Run-Jo Quarrell’s Cure4EdSharp Team

Earlier this year I was contacted via email by another Mum in Isabel’s class whom I had never spoken with, Jo Quarrell. She was aware of our little guy’s journey and was inspired by him to come out of running retirement and enter a Cure4EdSharp team in the Pub2Pub Run if I supported the idea. You can only imagine how touched we were by her motivation and kindness.

After many months of hard training Jo ran the 14.5km race in 70 minutes whilst the rest of the team (myself included) took a leisurely walk strolling crossing the line in around 2.5 hours.

It was beautiful sunny day and the post-race work out consisted of bacon and egg rolls and some well deserved bubbles.

A big thank-you to Natasha Gennusa, Alyson Perry, Stephanie Quinn, Jo Ingleton, Cris Unwin, Sania Saady, Jo Allen, and Sascha Chahwan-Harris for joining the team and many thanks to all those in the St Kierans community for supporting the team.

As always we are ever so touched by the kindness and generosity of all of those around us- the strength of the human spirit is amazing in times of adversity. So thank-you very much!!!

All of the monies raised from these fundraisers have gone directly to the Australian Niemann-Pick Foundation to be passed directly onto the Howard Florey Research Institute. To date the Australian NPC foundation has raised more than $80 000 so we are very close to the $100 000 target to keep the project going.

More information regarding this project can be found at https://npcd.org.au


A message from the President of The Australian Niemann-Pick Foundation

This was actually posted previously as a blog message but for those of you who missed it.

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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