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 IS A LIFELONG JOURNEY

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.

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 UNPREDICTABLE AND PROGRESSIVE

ways to get involved 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 spark a national conversation.

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 12 countries around the world.

LEARN MORE

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

DRAWING COMPETITION

We are excited to announce a wonderful new partnership with Card.Gift that will see two new card designs developed and sold in support of Neurofibromatosis Awareness Month in May and those living with NF.

Get your paint brushes out and sharpen your best coloured pencils to help design one of these cards! See your design online and walk away with a $150 gift card!

LEARN MORE AND ENTER