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Oct 15

Link to article – Runners take to the road to raise awareness for CJD

https://timesnewsgroup.com.au/surfcoasttimes/news/runners-take-to-the-road-to-raise-awareness-for-cjd/
Oct 25

Honouring International CJD Awareness Day 2021

https://www.cjdsupport.org.au/register-your-2021-cjd-awareness-event/
May 04

Australian blood bank reconsidering ban on UK donations (news article)

https://www.theguardian.com/australia-news/2021/apr/20/australian-blood-bank-reconsidering-ban-on-uk-donations-from-mad-cow-disease-era
Sep 22

From abc news: Trish's family knew something was wrong in late 2019 when she began struggling to articulate herself. "She started missing words, which was very unlike her," he said. The 64-year-old Hobart woman, whose family have requested their surname be withheld, was diagnosed with Creutzfeldt-Jakob disease, a rare degenerative and fatal disorder.

https://www.abc.net.au/news/2020-08-25/tasmania-parliament-assisted-dying-bill-family-shares-story/12588356
Sep 22

CNN report

http://edition.cnn.com/2017/09/19/health/fatal-insomnia-family-curse-somethings-killing-me/index.html
Jun 29

From the Wisconsin State Farmer

http://www.wisfarmer.com/story/news/state/2017/06/28/macaque-study-heightens-concerns-human-susceptibility-cwd/435656001/
Jun 20

From npr.org's Health News, Sonia Vallabh shares her story.

http://www.npr.org/sections/health-shots/2017/06/19/527795512/a-couples-quest-to-stop-a-rare-disease-before-it-takes-one-of-them

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Recent Posts

  • Register – CJDSGN Perth Meeting – Saturday 18th July 2026
  • Register – CJDSGN Melbourne Meeting – Saturday 23rd May 2026
  • Efavirenz, an already known drug, makes the leap to a clinical trial in Creutzfeldt-Jakob disease
  • Clinical Trial Update for Prion Diseases, March 2026
  • Register – CJDSGN Brisbane Meeting – 14th March 2026

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Make a donation to support CJD Research in Australia or to assist the work of the CJD Support Group Network supporting all Australians affected by CJD and other prion diseases.

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News & Events

  • Register – CJDSGN Perth Meeting – Saturday 18th July 2026
  • Register – CJDSGN Melbourne Meeting – Saturday 23rd May 2026
  • Efavirenz, an already known drug, makes the leap to a clinical trial in Creutzfeldt-Jakob disease

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CJD Support Group Network

3 months ago

CJD Support Group Network
A second human clinical trial for prion disease is now underway—an important and hopeful step forward for our community. Today the Broad Institute, Cambridge MA, officially announced that NN112 or PRiSM, their clinical trial of a divalent siRNA for prion disease, is enrolling. Please find a community statement attached.Additional resources:[clinicaltrials.gov/study/NCT07444580/][www.cureffi.org/.../divalent-sirna-clinical.../][www.prionalliance.org/.../first-in-human-trial-of...]For this trial sites recruiting will only be in USA. For families and individuals impacted, this represents more than progress in science; it brings renewed hope for treatments, answers, and ultimately a cure. We are grateful to the researchers, participants, and advocates helping move this critical work forward. ... See MoreSee Less
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CJD Support Group Network

3 months ago

CJD Support Group Network
Bridge to Brisbane run/walk.CJD Support Group Network has been registered as a Charity for this event, and if you would like to join our Group: Team Prion we could all meet up and run or walk together.Date: Sunday 13th September 2026.Registrations are now Open! Early bird rates are til 30th June.When Registering Group: Team PrionPIN: PrionSelect Charity page: CJD Support Group NetworkSo gather your friends and family, order a CJD t-shirt from our website and let's raise awareness and have some fun!Let us know if your in and we can make a messenger group to keep in touch. ... See MoreSee Less

Bridge To Brisbane | Queensland's Largest Fun Run

bridgetobrisbane.com.au

Join thousands of runners, walkers, and wheelers as we take over the Gateway Bridge on Sunday 13 September 2026 for an unforgettable morning.
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CJD Support Group Network

3 months ago

CJD Support Group Network
If you live in or near Brisbane and want to participate and join this event to raise awareness and funds for CJD/prion disease you can register your team using the link below.The CJD Support Group Network has been added to 2026 Transurban Bridge to Brisbane!Sunday 13th September 2026You can register as an individual or create a team in memory of your loved one. You can also create fundraising pages for this event to raise money for CJD/prion disease research in Australia. ... See MoreSee Less

2026 Transurban Bridge to Brisbane | CJD Support Group Network

click.grassrootz.com

Get ready to RUN FOR FUN when Queensland’s biggest, brightest, and best-loved fun run returns for it’s 30th Birthday in 2026! The Transurban Bridge to Brisbane will welcome an estimated 40,000 peo...
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CJD Support Group Network

4 months ago

CJD Support Group Network
www.cureffi.org/2026/03/17/ion717-trial-reopens/ ... See MoreSee Less

ION717 trial re-opens with 3rd dosing regimen

www.cureffi.org

Ionis Pharmaceuticals is adding a third dosing regimen to PrProfile, its Phase 1/2a trial in symptomatic prion disease.
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CJD Support Group Network

4 months ago

CJD Support Group Network
www.cjdsupport.org.au/trial-update-for-prion-diseases/ ... See MoreSee Less

Clinical Trial Update for Prion Diseases, December 2024 – CJD Support Group Network Australia

www.cjdsupport.org.au

December 2024 December 30th, 2024 – Enrolment is now complete for the Ionis Phase 1/2a clinical trial of ION717 called PrProfile for symptomatic prion disease patients. Updates will be provided as t...
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Close Menu
  • What is CJD?
    • Forms of CJD
    • Symptoms of CJD
    • Diagnosing CJD
    • FAQs
    • Fact vs. Fiction
    • An Introduction to Prion disease
  • We support …
    • CJD family and friends
      • How we can help
      • Request an information package or join our mailing list
      • Family stories
      • Genetic testing
      • Dealing with a diagnosis of CJD
      • What we can expect
      • Palliative care
      • Death with dignity
      • Grief
      • Infection control and funerals
      • Autopsies
      • Contact Us
    • People at “increased risk”
      • Human Pituitary Hormone Recipients
        • Timeline of the Australian hPH program
        • Pituitary hormones initiatives
      • FAQs
      • Contact Us
    • Health care professionals
      • Education program
      • Handbook
      • Contact Us
  • Resources
    • Brochures and fact sheets
    • Information Packages
      • For CJD family members
      • For Health care professionals
    • Clinical Workshops
    • Annual National CJD Conferences
      • 2023 14th Annual National CJD Conference
      • 2024 15th Annual National CJD Conference
      • 2025 16th Annual National CJD Conference
    • PRNP Genetic testing
    • Diagnostic tools
    • Publications
      • Articles of interest
    • Healthshare
    • Research
    • Australian research
    • Related links
    • Surveillance in Australia
  • Infection Control
    • CJD families and those at risk
    • Completing a screening questionnaire
    • For health care professionals
    • For hospital admission staff
    • Organ and tissue donation
    • Funerals
  • Fundraising
    • CJDSGN Research Funding
    • Donate online
    • Shop
  • News
  • About us
    • Meet the team
    • Purpose and objective
    • Who we represent
    • Services we provide
    • CJD International Support Alliance (CJDISA)
    • Dedication
  • Contact