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Tedx Talk- Dr. Valerie Sim, how her curiosity brought her to discover a new way to bring science to a deeper level.

By | News, Presentations | No Comments

This is just brilliant and comes from a lady who is a clinician and also a prion disease researcher and plays the fiddler like you would not believe. Dr. Valerie Sim is also a member of the Friends and Advisors Group of the CJD International Support Alliance and Medical Director of the Canadian CJD Association so is dedicated to assisting patient associations and CJD patients and families. This is the calibre of researchers we are so lucky to know are working hard to find a treatment or cure for this devastating disease called CJD or prion disease.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

Winners of CJD Raffle held in Loving Memory of Mario Papalia

By | Fundraising, News

Congratulations to the prize recipients of the CJD Raffle held in Loving Memory of Mario Papalia.

  • 1st Prize- Julie Mortimer, West Perth
  • 2nd Prize- Stewart Title, Victoria Park
  • 3rd Prize- Joe Versaci, Osborne Park

We would like to extend our most sincere gratitude to our family and friends for their continued support and generosity as we strive to find a cure for this disease.

The raffle raised $14,950.00 which is evidence that Mario’s generous spirit now lives on in all of those that had the privilege of knowing him.

Thank you to the sponsors that donated amazing prizes and a big thank you to Poppy’s Crusade and the Farlekas family for their assistance with making this raffle the success that it was.

Marie Papalia and family.

City2Sea 2017

By | Events, Fundraising, News

Date announced for the City2Sea in Melbourne is Sunday, 12th November 2017.

Unfortunately it is the weekend before our conference but it does fall exactly on CJD International Awareness Day 12th November. Please save the date and join us again this year to promote awareness of CJD and prion disease and raise funds for our research teams.

CJDSGN T-shirts available for all who participate. Please let us know if you are coming along and start now by setting up your fundraising page.

New guidelines for genetic testing for CJD and other prion diseases

By | News

We are very pleased to announce that the guidelines for PRNP genetic testing, produced in 2016 by a working group chaired by Professor Martin Delatycki,  are now completed and have been submitted to the Human Genetics Society of Australasia (HGSA) for ratification.

The following guidelines are recommended procedures, not regulations. They are recommendations concerning the use of genetic testing for the detection of mutations in the prion protein gene (PRNP) and were developed by a committee consisting of representatives of genetic counselling services, genetic testing laboratories, the CJD Support Group Network (CJDSGN) and the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR).

These recommendations are to be used to protect and assist at-risk individuals and should be therefore freely available to patient families to ensure that they are able to make independent informed decisions. These guidelines are also intended to assist clinicians, clinical geneticists, genetic counsellors, testing laboratories, health departments, ethics committees and lay organisations in caring for patients and their families.

PRNP Guidelines April 2017

Fundraising Raffle

By | Fundraising

The Papalia family in WA has organised a raffle to raise funds for CJD research in Australia.

This family lost a husband, father and grandfather to this devastating disease in late 2015 and have been raising funds and promoting awareness since that time.

Tickets are now on sale and $5.00 could win you one of three fantastic prizes.

Please call Maria on 0412905588 if you would like to purchase some tickets, or even better sell a book, to assist this fantastic cause.

All proceeds raised will go to the CJD Support Group Network and every cent will be directed to support research of CJD and other prion diseases in Australia.

Thank you to Poppy’s Crusade for assisting the family with this fundraiser.

Book Mercies in Disguise now released

By | News