MAY IS NEUROFIBROMATOSIS AWARENESS MONTH

May is an opportunity to educate the community on the signs and symptoms of NF, advocate to improve health outcomes, and elevate the voices of those living with this devastating condition.

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NF tumours should never be a child's normal

Sadly, every 3 days a child is born with neurofibromatosis (NF) in Australia and they will need a lifetime of support.

NF Awareness Month is held each year in May and is an opportunity to educate the broader community on the signs and symptoms, advocate to improve health outcomes, and elevate the voices of those living with this devastating condition.

This campaign aims to highlight both the diverse nature of the condition and the resilience of this community.

a single gene change can lead to a lifetime of NF tumours

NF refers to a group of complex genetic conditions that cause tumours to form on nerves, under the skin and deep in the body – affecting 1 in every 2,000 births or about 4 million people worldwide. NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2), formerly known as neurofibromatosis type 2.

Roughly half of all cases arise in families with no history of NF and it can affect anyone regardless of ethnicity, gender, or family history.

NF can lead to significant health issues, including blindness, hearing loss, bone abnormalities, tumours, chronic pain, physical differences, learning difficulties and even cancer. The signs, symptoms, and management of each type of NF are different and there is no way to predict how mildly or severely someone will be impacted.

NF IS A LIFELONG JOURNEY

NF is often diagnosed in childhood, but it is a lifelong genetic condition that can have a profound impact on a person's life.

Since Michael he was 16 years old, Michael has experienced reduced hearing, numerous brain and spine surgeries, and facial nerve damage as a result of having NF2. Surprisingly, NF has offered a silver lining, grounding him and highlighting life's true priorities. NF tumours should never be anyone's normal.

For nearly thirty years, Janu was unable to openly acknowledge her NF, even as visible lumps and bumps emerged. Her silence about such noticeable changes fostered feelings of shame, anxiety, and depression. She now knows that while pain may be inevitable, suffering is optional.

ways to help conquer nf this may

shine a light on nf

Shine a Light is an initiative that brings NF out of the shadows and into the community as part of NF Awareness Month.

By lighting up buildings, monuments and landmarks blue and green on and around May 17, we put NF in the spotlight and would like your help to share photos from around the country!

We form part of a global movement working to make NF visible. This initiative started in the US and is now supported by more than 15 countries around the world.

CHECK OUT DATES AND LOCATIONS TO PLAN YOUR NIGHT

take steps towards a cure

Walk or run 150km in May for the 150 children born with NF each year in Australia. Help make strides in NF Research by registering for Steps Towards A Cure this May.

It’s FREE and you can participate from ANYWHERE in Australia. Today there is no cure for NF. Tomorrow is another story.

wear a ribbon IN MAY

Wear a ribbon. Show your support.

This blue and green awareness ribbon is worn as a statement of support for every person living with, or impacted by neurofibromatosis.

You can purchase one to wear through our online store, from Kidstuff stores nationally, or you can order a box to sell at your school, workplace or fundraising event.

ORDER YOUR RIBBON or ribbon box TODAY

CHECK OUT THE DIGITAL OUTDOOR SITES