24 hours of Daytona Updates

Well we pulled it off.  The car completed the course but, not in the way you might think.

At some time in the evening/night it was discovered that the engine had some type of crack or other damage.  Normally this would put any car out of commission.  In the end they decided to park the car and hold it till the last 1/2 hours or so of the race.  This would at least give all the kids and Heroes something to cheer on at the end of the race.  A very smart move on the part of the drivers and crew.

So in the end they only completed 310 laps.  In years past they have been able to do over 600 laps.  They still did over 1100 miles in the car even with all the trouble.  The other car racing for Magnus racing that had graciously donate their car for use by Children's Tumor Foundation did come in first for the GT class.


Our party at BJ's Brewery and Restaurant in Torrance was great. Tons of pizza and their huge cookie dessert.  Plenty of drinks as well.  Sure was a satisfying event.

Now due to the reservations about the state of the economy the donations that year are more in the $500,000 - $600,000 mark.  Off from the $700,000 of last year and not nearly as good as the 1 Million mark they wanted to achieve.  However, even this lower amount will help to provide much needed research.  Research that will help find answers about tumors, learning disabilities, bone deformities and much much more.  All world class research.

So if you have a few bucks to spare please make a donation.

http://ctf.kintera.org/r4rp/brendamccool2012

The over 100,000 people living with Neurofibromatosis (NF) in the USA will thank you, and who know it might just help some other person due to related research.  So much is interconnected when it comes to research.

If you want you can also bid on some of the stuff used at the race like a helmet, seat belt, and even a car.  Check it out

http://ebay.com/ctfauction

Already planning for next year.  It shall be bigger and better.

Buaidh - NO - Bas

Attention all Cars - Daytona here we come

As I like to do on this blog here and there I'd like to highlight a very worth while event and fund raising opportunity.

Recently, in just the past several year the Children's Tumor Foundation (http://www.ctf.org) began to use the 24 Hours of Daytona endurance event as a fundraising vehicle.

Here is how Racing4research works.

A race team donates their vehicle, driver time, and crew  to be run at the 24 hours of Daytona endurance event.  The car competes in the 24 hours of non-stop driving with the goal of raising funds to end  Neurofibromatosis (NF).  Persons pledge per lap or give a flat amount as a donation.  In the past the car has been able to complete over 600 laps.  That is quite the feat as each lap is about 3.52 miles.  So that means they ran the car for over 2100 miles in 24 hours.  Some professional teams can't even finish the event due to a break down or other trouble with the car.

What makes this event special is the fact that almost every year they include the Names of NF Heroes on the vehicle.

It's is becoming so big that I wonder where they will be able to put all the names.  And they still find some room for those that want to advertise on the vehicle as sponsors with all the proceeds going into the fundraising pool.

So what exactly will this money raised be used for?  Well it all goes toward funding the Drug Discovery Initiative (DDI).    This program provides grants to take currently available drugs and see if they can be applied to helping solve some of the symptoms of NF.  In the past they provided funding to a researcher in Germany that found out that Lovastatin promotes bone growth.  Potential useful for all those that suffer from bone deformities as a result of NF.  This lead to further research in places like Australia, and Vanderbilt University.  And the good part is results have to be received in within 6 months so there is a quick turn around on the seed money.  As potential benefits are seen further larger grants can be obtained.

What gets me excited is that a condition like Pseudoarthrosis (improper healing of bone fractures) that afflicts such a small portion of people with NF has been able to get so many advances because of DDI and the money raised by Racing4research.

Those many of the other effect of NF like Learning Disabilities and Tumors are also being researched.

As you read the stories of the many NF Heroes you will see so many challenges to over come - Bone Deformities, Tumors, Hearing Loss, vision issues due to brain tumors and the list goes on.

I'd like to highlight just one of these heroes that daily is dealing with the effects of NF.  Her name is Brenda and she was first diagnosed with Tibial Dysplasia (Psuedoarthrosis) at 9 months of age.  Since then she has been wearing a brace literally daily and has had to have surgery to insert a rod into her leg after breaking it repeatedly.  She is still not out of the woods and constantly faces the risk of a hair line crack or fracture.

So please join with me and donating to find an end to NF.

Here is her personal page - and it needs more donations from good hearted people like you -
http://ctf.kintera.org/r4rp/brendamccool2012




Here are a few of the local race events you can participate in by state.  Most have a raffle or silent auction and plenty of good food.

Arizona - Tuscon
California - LA Area
Nevada - Las Vegas
Utah - Salt Lake

http://ctf.kintera.org/r4rp/brendamccool2012

Together we can get through this and find a cure.

Buaidh - NO - Bas

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