So proud of Dr Cathryn Haigh, affectionately known as 'Our Cath' as she worked with our researchers in Australia for many years before becoming a senior researcher at the NIAID Rocky Mountain Laboratories in Hamilton, USA. Cath contributes the start of this work to a donation made via the CJDSGN as seed money by Mr Graham Murray of AACS Pty Ltd in memory of his daughter Silva Coelho who died of CJD at age 39 in 2009. Graham has also funded a number of grants and memorial awards as well as travel award that assist students and young researchers to attend International Prion conference. The CJDSGN is very proud and grateful of the support that families provide from their fundraising efforts and memorial donations enabling the CJDSGN to assist our researchers so far by providing 1.2 million in funding support. We certainly are a CJD family community working together towards a treatment or cure. Supporting the CJD foundation if you live in USA and the CJDSGN if you live in Australia does make a difference and assists prion disease research. www.nih.gov/news-events/news-releases/niaid-scientists-develop-mini-brain-model-human-prion-disea...
NIAID scientists develop “mini-brain” model of human prion disease
Researchers hope the human organoid model will enable them to evaluate potential therapeutics.If you want to register to attend the CJD Foundation family conference in Washington DC in July the early bird registration rate finishes tomorrow. secure.qgiv.com/event/conference-2019/?utm_source=Conference+EM9+-+060819&utm_campaign=Conference...
The CJD Foundation Family Conference
The CJD Foundation's Family Conference, held annually in Washington, D.C., brings together prion disease experts and families affected by prion disease. Saturday and Sunday, we’ll learn about the latest scientific discoveries. With the help of our Medical Director, we invite scientists conducting ...An easier link to the Sabrina story told by Marie and Katie during the CJD International Support Alliance presentation at Prion 2019 in Edmonton last month.
globalnews.ca/news/5352700/alberta-mom-fatal-dementia-donates-body-research-lauman/?fbclid=IwAR3E...
Alberta mom who died shortly after giving birth donates brain, placenta to research
Doctors didn't think Sabrina Lauman would live long enough to give birth. She did. Then she passed away and donated tissues to research on her rare dementia.The City2Sea in Melbourne was cancelled in 2018 and we are so lucky that one of our families is working hard to get a CJD Fun Run going in Melbourne for 2019. It will be the day after our Annual National CJD Conference on 26th October so being the same weekend so are hoping that those of you attending the conference will also want to be part of this inspiring awareness promoting and fundraising event. This event has been organised by the family and friends of Sandra Kernahan and is planned to bring members of our CJD family together to raise awareness and funds in the hope that families do not have to continue to endue the loss of a loved one to such a devastating disease. Please join us and be part of #seaoforange to support the finding of a treatment or cure for prion disease.
I know that many of you who attended our CJDSGN conference last November were touched by the story shared by Dr Valerie Sim's about her patient who was suffering with CJD and pregnant. As you would have seen Stella was bought into the world and is doing but Sabrina lost her battle just a short time after Stella was born. . Such a sad but touching story that was presented to the 300+ scientific audience at Prion 2019 as part of the CJD International Support Alliance presentation. Thank you to Marie and Katie for being so brave to share their story to show how important research into Prion disease is for so many globally. Your continued efforts to promote awareness are inspiring.
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