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CJD Support Group Network

4 weeks ago

I want to thank those of you who set up fundraising pages through facebook or paypal giving, to support CJD Support Group Network, for example as a birthday fundraiser and also those who make individual donations via facebook and paypal giving. We do receive the funds monthly and I understand there are no fees deducted as we are a registered charity. Can I just ask that your notify us by email contactus@cjdsupport.org.au or post your page in this group so that we can acknowledge and thank you and allocate the donations in memory of your loved one. There is a dashboard but that shows the donor as anonymous. I have realised if we go further we can see the name of the fundraiser but that does not always help as it only gives a first name only and with individual donation we cannot see a name at all. Checking this week I can see a fundraising 'Ian's birthday fundraiser' but have no idea who Ian is. If you are in this group Ian please let confirm. We are extremely grateful for your generosity, and so are our prion disease researchers who we support by funding equipment and projects, but if we do not acknowledge you and your fundraising effort I want you to understand why because unless you let us know we do not know. You can also donate via our website www.cjdsupport.org.au/fundraising/donate-online/ that way we are fully aware of your donation. We can set up personalised donation pages with a photo and some text about your loved one if you are planning a fundraiser and will update with total of donations received and where the funds are allocated. Donations via our website automatically receive as tax deductible receipt and allocated in your loved ones memory. ... See MoreSee Less

CJD Support Group Network

4 weeks ago

It is good to see the US policy on blood donation is coming more into line with the policies in place in UK and Australia. My understanding of this article is that now family members of a sporadic CJD patient when PRNP (DNA) testing has confirmed the patient did not carry a genetic mutation for prion disease, will be able to donate blood US as they can do in Australia and UK. for human pituitary hormone (hPH) recipients are increased risk of developing CJD it is interesting to note that in US this cohort will still not be able to donate blood but will be removed from medically deferred lists. This is not the case in Australia or UK but certainly if this is one day changed and reflected in our Australian CJD infection control guidelines it will save a lot of angst for hPH recipients who suffer delays, discrimination and refusal of surgery when requiring a procedure that involves high infectivity tissue.
www.raps.org/news-and-articles/news-articles/2020/8/fda-updates-deferral-guidance-for-blood-and-p... ... See MoreSee Less

CJD Support Group Network

1 month ago

Following on from yesterdays post an interview with Grahame and Helenhttps://www.abc.net.au/radio/hobart/programs/mornings/family-of-tasmanian-woman-who-took-her... ... See MoreSee Less

CJD Support Group Network

2 months ago

For those of you taking Granagard ie patients or prion disease mutation carriers this article is of interested. The CJDSGN has purchased Granagard in bulk from Israel and can provide to anyone at the reduced cost price of A$40.
thejewishvoice.com/2020/08/studies-show-pomegranate-supplement-slows-neurodegenerative-diseases/ ... See MoreSee Less