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Neurofibromatosis Society of Ontario

As part of NF Awareness Month during May and in celebration of our 30th anniversary.  The Neurofibromatosis Society of Ontario has setup a t-shirt campaign with shirts priced at $12.99. We decided to set the price of our t-shirts low in order to offset the cost of shipping and to make them more affordable to as many people as we can.

The front of our shirt carries our new logo in mono colour, the back of our shirt has the tagline “Don’t Judge my story by my cover. - It is not uncommon for individuals with NF to be picked on and judged by the way I look by their peers at school. This judgment extended into the everyday realm of being out in public also. We can sometimes receive stares from people at the gym, on public transit, or at a restaurant because of their NF.  It doesn’t feel very good. This shirt is not only for awareness but also a representation of how people with NF feel. In fact it represents how everyone feels, that is - not to be judged on how they look.

If you buy this shirt, we hope you that wear it year round to help raise awareness about Neurofibromatosis on a continuous basis. If you have NF, it’s also a reminder not to judge a fellow brother or sister’s NF story based on their cover. We are all in this together. NF can feel just as challenging to a person with lots of visible fibromas on their skin. It can feel just as challenging to a person without visible fibromas on the surface, but has lots of tumours on the nerves under the skin. It can feel just as challenging to a person who has been diagnosed for the first time in their adult life or to the parent who’s told by a doctor that their child has NF.

About Neurofibromatosis

Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
Types Of Neurofibromatosis

Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis.

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.

About the Neurofibromatosis Society of Ontario

The Neurofibromatosis Society of Ontario was founded in 1985. We hold bi-annual meetings in the Toronto area with related guest speakers. We offer an opportunity for people with NF to network and share their feelings and concerns with others through social activities in a friendly atmosphere of acceptance.

We are not funded by the government and rely on donations and fundraising initiatives to financially sustain our activities which include newsletters, toll free help line, literature, support meetings and more.

Our Vision

A life without tumours and suffering caused by Neurofibromatosis.

Our Mission
  • To raise awareness and promote discussion in order to educate the public about NF.  
  • To support people affected by NF.
  • To support research to help find a cure for NF.
For more information about our charity, please visit www.nfon.ca 

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Light Blue Gildan Adult Cotton Custom Crewneck Tee

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