NF Awareness Month

NF News / 15 May 2018

May is NF Awareness Month and our goal is to bring it to the attention of the wider community, including the media, politicians and businesses, and we would love your help.

If you are planning an event this month, you can download our poster here!

We are also very excited to be launcing our Tax Appeal, which this year focuses on the beautiful story of one of our NF2 Heros, Libby. Click through to read more and find out how you can help.

We also want to take the opportunity to reflect on our acheivements over the past few months. These include:

  • NF Inaugural Symposium and Information Seminar that assembled clinicians from around the country for the first time to focus on NF.
  • National TV coverage on Channel 9 news for our Cupids Undie Run that saw record attendances across 17 cities.
  • Our Donor Dinner in Sydney raised the awareness for NF with the business community with an article appearing in the Sunday Telegraph promoting CTF – it also raised funds for the services we provide.
  • We continued our funding of the Murdoch Children’s Research Institute and our Vic/Tas Support Coordinator, as well as Royal North Shore Hospital and it’s clinical services including the skin clinic.
  • The Barney Fellowship has commenced with an oncologist at MCRI and agreement reached on research. The primary aim of this research is to investigate auditory processing and speech perception in children with NF and examine the relationship between auditory processing function and clinical outcomes. The team will use state of the art neuroimaging procedures to examine the brain networks underlying the auditory processing difficulties.
  • We announced the funding which has commenced for the Centre of Translational Research at RNS with the generosity of the Hughes and Listorti families (who are now Ambassadors). This will also work on breast cancer and NF research.
  • We donated two years of funding to Children's Hospital Westmead for the Clinical Nurse Specialist, who is soon to be announced.
  • We reached formal written agreements with The Royal Brisbane Women's Hospital to develop our NF clinic, including NF2 with a QLD/NT Support Coordinator.
  • CTF and Dr. Mimi Berman have commenced discussions with Government to advocate for lower cost pharmaceutical treatments.
  • Several community support events, including Family camps around the country.

Other Initiatives for May include:

  • A major Fundraiser for the business community in Sydney on May 1.
  • The release of our NF Hero book, which is great for children to read or have read to them to help understand NF and celebrate our differences.
  • An article in the Sunday Telegraph talking about NF and the Centre of Translational Research.
  • A/Prof Nigel Biggs, a Fellow of Royal Australasian College of Surgeons in the Specialty of Otolaryngology, Head and Neck Surgery, speaking on NF2 in a webinar.
  • Launch of our Tax Appeal with an NF2 focus.

I hope everyone has a great month and we work together to spread the word on NF.

Derrick Hubble