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:
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