Suggestions?

Hey readers,

I know i haven't been blogging lately (Very sorry)! I have been very busy. id like to use this post to ask if anyone has any events coming up that you would like me to put on here for everyone to see!

send me an email at: kxk1060@gmail.com

i look forward to hearing from you and posting more

sources of inspiration

Blog Inspiration

Hi readers!

What have i encountered in my day to day life that has inspired some potential improvement to the design of my blog? I believe that just using the internet and conducting research on other sites about what i have been blogging about has inspired me. I believe that I was inspired to focus on what we can do to raise awareness and money for the cause.

One of my main sources of inspiration for design has been the blog on neurofibromatosis' set up and design on The Children's Tumor Foundation site.  Living with NF has also inspired me to create this blog. I chose the colors white and green because Green is one of the colors for NF. One more source of inspiration is another blog about Neurofibromatosis, http://nfpain.blogspot.com. they have some great and touching posts, you should definitely check out if you are interested. It definitely inspired me and I'm sure it will inspire you as well.

Color of inspiration, as i said was green, the two colors of the NF ribbon for awareness are green and blue so i took the layout for my blog with Green in it.

For typographic inspiration, i did not really have one. I went with the traditional and normal typography, not only because it is easier to read, but it is general and the main font.

So in conclusion, I was more inspired from my life experiences dealing with Neurofibromatosis when it came to creating this blog, I was inspired by an additional blog about this disorder, and i was inspired with the color green because that is the color of the awareness ribbon.

thank you for your time and interest

kara

Get involved- NFCA pittsburgh

Good evening readers,

If you or a loved one have neurofibromatosis and are from Pittsburgh Pennsylvania, you should look into, and become more involved in the NFCA. The NFCA is a non-profit association that is dedicated to raising awareness and supporting families with neurofibromatosis. Their vision is a world that neurofibromatosis is no longer an incurable condition. There are many ways you can get involved!

visit nfpittsburgh.org for more information!

kara

Events...Events...Events

So what are some big events that are held to raise awareness and money for Neurofibromatosis awareness? There are tons of fun events that you can choose from in an area near you.

 Great Steps 4NF: The Great Steps 4NF™ Walks include the largest walk for NF in the country in Naperville, IL. These walks bring co-workers, friends and family together as one community for the neurofibromatosis cause

Run 4NF: NF Midwest

Walk on the Wild Side: Pittsburgh Zoo Walk for NF

Annual Golf Outing: Pittsburgh, PA

There are many many more events that are available and you can even create your own!
do some research, and support the events around you that are in support of Neurofibromatosis. 

have a great day readers!

kara

Neurofibromatosis Summer Camps

Good afternoon readers!

So do you or your  child have the genetic disorder Neurofibromatosis? If so, here is an awesome opportunity for your child to meet some friends that they can truly connect with. There is a summer camp that kids and young adults with Neurofibromatosis can attend and it is called Camp New Friends or Camp NF. It is a fun and supportive environment for young people with Neurofibromatosis. I would highly recommend trying it out or making a donation to the camp, it can make a huge difference!Camp New friends gives young people the opportunity to interact with older people and volunteers that live effectively with the same condition and give them hope for their future

2015 Camp New Friends Dates:

July 19-25, 2014

High View, WV

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

What is NF?

"Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various nerve endings. Basically, Neurofibromatosis causes tumors to grow anywhere in the body. There are different Types of Neurofibromatosis: Neurofibromatosis type 1, Neurofibromatosis type 2, and Schwannomatosis (which is a rare form) "

There is NO know cure for neurofibromatosis and it is not a well known disorder so spreading awareness is super important!

go to this website to look more into this genetic disorder

http://www.ctf.org/Learn-About-NF/What-Is-NF.html

- kara

Introduction post

Hello!

My name is Kara  and I'm glad you have stumbled upon this blog! Twice a week i am going to be making new posts to inform you about the genetic disorder called Neurofibromatosis (NF) in the hopes to spread awareness around and educate you about it. So keep checking in to this page in order to learn more about Neurofibromatosis!

- kara