Neurofibromatosis (NF) is a genetic disease. One that I have. This is an informative page all about it, and how to raise awareness for it. All of the updates will be put at the bottom of the page as to not take away from what this disease is. Before I get into the details about NF, I'm going to provide  a list of online resources.  (known as the CTF)

Break down of NF

NF is a genetic disorder of the nervous system, affecting how the nerve cells grow. The nerve cells can form at odd angles, grow tumors (non cancerous and cancerous  and affect the cardiovascular system. There are three types of NF and there is no cure for any of the three. 

  1. NF 1- starts at birth, is found in 1 out of 3,000 births.(This is the type that I have, so I have the most information on this type)
  2. NF 2- usually develops in the late teens, is found in 1 out of 25,000 births.
  3. Schwannomatosis- the last and rarest form, found in 1 out of 40,000 births. 
If my husband and I get pregnant, with each pregnancy, there is a 50% chance of the baby being born with NF. Meaning that there is a 50% chance of it not happening. 

Beside tumors there are other various complications of NF including but not limited to:

  • Neurological problems
  • Skeletal problems
  • Visual difficulties
  • Partial or totally deafness
  • Benign brain tumors(meningiomas)
  • Spinal tumors. 
  • People with NF 1 also are at a higher risk than the rest of the population for certain kinds of cancer including: Breast cancer, Soft tissue cancer, Leukemia, and brain tumors

NF Facts :

All the facts were taken from the CTF facts page.

  • NF1 is one of the most common Neurological Disorders caused by a single gene. 
  • Although most cases are mild to moderate, NF1 not only can have the complications listed above, but loss of limbs, malignant tumors and learning disabilities. The learning disabilities are at least 5 times more common in NF 1 than the general population. 
  • 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," had Proteus Syndrome, an entirely different disorder.
  • NF research began eighteen years ago by the Children's Tumor Foundation, and has been enormously productive ever since.

How Can You Help????

You can become an Advocate for NF. The CTF has a ton of resources and ideas on how to be an advocate . For me, I want there to be more money raised for funding.  When it gets to the the time (and I will post about it) please contact your senator, so they can vote to pass a bill to help with NF funding. 

Have a tea for NF party, Join in a NF walk or run, read blogs about NF (check out the list below), and take the  button I made for NF. Please post it somewhere, so many people can read it.  


Update (3/23/13)

Yesterday I received some news from the NF Network out of Illinois.

"Today we are celebrating the good news that $15 Million, less cuts from sequestration was appropriated to the Army’s NF Research Program through the Congressionally Directed Medical Research Program funded through the Continuing Resolution for fiscal Year 2013.

The bill will then go to the President for his signature. 

The NF Network Thanks everyone who made calls and sent emails encouraging the inclusion of the Army's NF Research Program this funding.

Thank you for your support!"

This lead me to do some more research on what they are talking about.  I was lead to this Website. ( ) and what I read brought tears to my eyes. The Army wants to do research to help improve the quality of life  for those with this disease.  To me that's wonderful. And I wish, hope and pray that the President has it in his heart to sign the bill and to give the funding.  I'm asking if you can all please do the same. Please pray that our President will sign this bill. Thank you. 

No comments:

Related Posts Plugin for WordPress, Blogger...