Why is it important to spread awareness

Awareness about neurofibromatosis is important because not a lot of people are aware that it exists. Only 1 out of 3,000 people have NF1. So it is not too common. Even though nf is not too common, it is still crucial that you get the word out in any way you can. Raise awareness or raise money. Just don't try to sell cookies on a college campus cause apparently that doesn't work too well. May is neurofibromatosis awareness month. What are you going to do?

Kara

What are you gonna do?!

good evening readers,

or good morning...anyways, yesterday I talked about how may is Neurofibromatosis awareness month. But you definitely do not have to limit spreading awareness of this genetic disorder to just one month. Awareness is so important. Neurofibromatosis is not well known about at all to the public. In my experience with talking to people about it, unless its a medical professional, the person has never even heard about Neurofibromatosis. This is why YOU are so important in playing the important role of spreading awareness about this disorder. so that one day we can live in a world where people do not have to go through the pain and complications that NF can cause. So one day there can be a cure. What are you going to do to spread the word? Are you up to the challenge to shine the light upon Neurofibromatosis? not only in May but RIGHT NOW?

drop a comment and let me know what you are doing to spread the word

good night and thank you

Kara

Neurofibromatosis Awareness Month

So... when is Neurofibromatosis Awareness month??

 The month of may is national Neurofibromatosis Awareness Month! So next Month lets shine a light on Neurofibromatosis!

 We can spread awareness using: SOCIAL MEDIA

For the month of May, let's make some noise and let people know Neurofibromatosis is important to you by changing your Facebook profile picture to support Neurofibromatosis.

You can also spread awareness by positing facts about Neurofibromatosis such as 

thank you for your time today

remember to spread awareness this MAY

- KARA

How can you get involved?

Good Evening readers,

 

Tonight I am going to be giving you some ways that you can get involved in order to cure NF!

 

here are some ways to get involved:

 

- Raising Awareness

- Raising Money for research

- Getting involved with the NF community around you

- Volunteering

- participating in events

 

together we can find a cure. Get involved TODAY

 

 

 

Facts and statistics

Here are some additional Facts and statistics that are pulled straight from www.ctf.org

·	NF has been classified into three distinct types; NF1, NF2 and schwannomatosis.  They are caused by different genes, located on different chromosomes.
·	NF1 is the most common neurological disorder caused by a single gene;  occurring in one in every 3,000 children born.
·	NF2 is a rarer type, occurring in 1:25,000 people worldwide.
·	While today there is no consensus, studies indicate that schwannomatosis  occurs in 1:40,000 people.
·	The Neurofibromatoses are genetically-determined disorders which affect more than 2 million people worldwide; t his makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined.
·	All forms of NF are autosomal dominant genetic disorders which can be inherited  from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.
·	Each child of an affected parent has a 50% chance of inheriting the gene and developing NF.  The type of NF inherited by the child is always the same as that of the affected parent,  although the severity of the manifestations may differ from person to person within a family.
·	NF is worldwide in distribution, affects both sexes equally and has no particular racial,  geographic or ethnic distribution. Therefore, NF can appear in any family.
·	Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness;  skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities.
·	NF1 also has a connection to developmental problems, especially learning disabilities , which are five times more common in the NF1 population than in the general population.
·	The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears,  commonly causing deafness and severe balance problems.
·	NF2 brings on increased risk of other types of nervous system tumors as well.
·	NF2 can also cause severe vision problems, including cataracts, retinal abnormalities and orbital tumors.
·	Accordingly, NF research may benefit an additional 100 million Americans  (i.e. 65 million with cancer and 35 million with learning disabilities).
·	NF is not the "Elephant Man's Disease," although it was at one time believed to be.  Scientists now believe that John Merrick, the so-called "Elephant Man," h ad Proteus Syndrome, an entirely different disorder.

Help to those who were recently diagnosed with neurofibromatosis

Good afternoon!

So now that you have a little info about neurofibromatosis, i am now going to talk about Neurofibromatosis and about being recently diagnosed. Obviously if you are recently diagnosed with anything there are always tons of questions, the most frequent one being "what now?".  According to www.ctf.org, here are the first steps if you or a loved one has been recently diagnosed with neurofibromatosis.

- get the facts

- Enroll in the NF Registry

- find a doctor that knows about NF

- Get support

- Find a doctor that knows about NF

- Stay in touch

- Join our advocacy outreach

- Get involved

- Ask Ask Ask

if you or a loved one have recently been diagnosed with neurofibromatosis, visit a support page

http://www.ctf.org/Community-Relations/Community-Relations-Homepage.html

you can click on your state and find a support group near you today! 

- Kara

Neurofibromatosis type 1

Hello- today i am going to write a little about NF type 1.

NF 1 is also known as von Recklinghausen NF or Peripheral NF. It occurs in 1:3,000 births. Neurofibromatosis type one is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. It can also cause enlargement and deformation of the bones, as well as curvature of the spine (scoliosis). Occasionally, Neurofibromatosis type one may also cause tumors to develop in the brain or the spinal cord. 50% of people with NF 1 may also have learning disabilities. 

So...how do you know if you have NF 1?

1. Family history of NF 1

2. 6 or more light brown cafe-au-lait spots on the skin

3. presence of two or more pea-size bumps (neurofibromas) on the skin or one or more plexiform neurofibroma

4. freckling under the arms or in the groin area

5. Pigmented bumps on the eyes iris (Lisch nodules)

6. Skeletal abnormalities such as bowing of the legs or thinning of the shin bone

7. Tumor on the optic nerve that may interfere with vision

8. Epilepsy (epilepsy in NF1 occurs with a frequency of 3.5-7.3%)

for more info visit:

http://www.ctf.org/Learn-About-NF/Diagnosis-of-NF1.html