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.
Donate online – CJD Support Group Network Australia
www.cjdsupport.org.au
Acceptance of any contribution, gift or grant is at the discretion of the CJD Support Group Network Australia. The CJD Support Group Network Australia will not accept any gift unless it can be used or expended consistently with the purpose and mission of the CJD Support Group Network Australia.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...
FDA updates deferral guidance for blood and plasma donation
www.raps.org
An update to guidance for industry on reducing the risk of transmission of Creutzfeldt-Jacob disease (CJD) through blood and blood components clarifies terminology and recommendations for patients who have received cadaveric pituitary human growth hormone. Some previous travel-based deferrals have a...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...
'I'm going to hear that for the rest of my life': Daughter tells of last memories of dying mum
www.abc.net.au
Tasmanian family shares their wife and mother's story ahead of Thursday's tabling of voluntary assisted dying bill.Trish took her own life while suffering from a fatal disorder. Now her family is sharing her story
www.abc.net.au
Trish was 64 when she took her own life after being diagnosed with Creutzfeldt-Jakob disease, a rare degenerative disorder. Her family is sharing her story as Tasmania's Parliament prepares to debate a bill on voluntary assisted dying. Warning: this article contains distressing content.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/
Studies Show Pomegranate Supplement Slows Neurodegenerative Diseases - The Jewish Voice
thejewishvoice.com
Israel-developed GranaGard is proving in study after study to have remarkable antioxidative effects on cell health for people with MS, Alzheimer’s and even aging. By: Abigail Klein Leichman Everybody knows that the pomegranate is a superfood. One of the seven native fruits of Israel, pomegranates ...© 2020 CJD Support Group Network Australia.
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