Racing4research on Today Show

Hey Racing4Research friends! TUNE IN to the TODAY Show this Thursday, July 28st during the 8:00 am hour. They will feature a story about the Children's Tumor Foundation, our Racing4Research program and Blake - an incredible kid and one of our NF Heroes.

 

The racing4research  program is fabulous.  It couples the thrill of racing and fundraising.

Local NF Heroes (My Daughter included) have the ability to fund raise using the car as a draw.  Locally in January many areas have race day parties.  The last couple we have been to in Torrance CA at the BJ's Brewery and Restaurant have been just amazing.  

The best part is each Hero is able to have their name on the car.  This makes it their car and they then get more excited as it runs ~3 mile laps in Daytona.  The last couple of years it has been pushing 600+ laps in 24 hours.   That's amazing as some cars can't even complete the event due to technical issues with the vehicle or crashes.

SO go and find out about a few of the extraordinary people living with Neurofibromatosis.

To make a donation - http://ctf.kintera.org/r4rp/brendamccool2012

http://www.ctf.org/Racing-4-Research/2011-nf-heroes.html  you be amazed at their stories of hardship, and struggle.  This is not something that will simply go away.  It's a life long condition..... only through your support do we have a hope of finding effective treatments and ultimately a cure.

Facts & Statistics

	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; occuring 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, similar to NF2.
	The Neurofibromatoses are genetically-determined disorders which affect more than 100,000 Americans; this 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 and 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," had Proteus Syndrome, an entirely different disorder.
	NF research began eighteen years ago by the Children's Tumor Foundation, has been enormously productive ever since.

 http://www.ctf.org/Living-with-NF/facts-a-statistics.html

 

Buaidh - NO - Bas