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| Julia's running the coast for NF! |
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| A run with a view. |
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My last run for NF was Phoenix 2007. A few months later we packed up our home and headed Downunder. So it's time to get moving again, and do something to raise funds for research.
So, what is NF?
Types Of Neurofibromatosis
Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis.
Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.
Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.
Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.
My first run for NF was San Diego, June, 2001.
We were a small but dedicated group. You should see the team now!
I have really missed the NF Endurance Team. There isn't anything like it here in Australia.
I wonder if that can be changed?
This run will be what is sometimes referred to as a Bad Ass run.
*No start gun
*No water stations
*No finisher's medal
I will probably be the lone runner, although I am hoping a couple of running buddies will join me.
The plan is to head out on March 7th, 2010 at 7am as Steve Kendra (our fearless leader) heads off to run the marathon in Antarctica!
The course will be a track that winds itself along the coast from Minnamurra to Werri Lagoon. It's about 21K. In other words a half marathon. I'll have the ocean on my left and in some areas there will be cows as the track also goes thru' farms.
Ralph and Jess will be my support crew!
I am coming to you again for support. Research is costly. Funds to find a cure for this disorder are needed. Many with NF suffer greatly.
It's time the NF Endurance Team went International.
It's time for a cure!
Will you help? |
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Sorry.
Fundraising has ended.
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Total Donations: $500.00
Goal: $2,000
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Below is a video from the Children’s
Tumor Foundation that demonstrates how your support benefits nearly
2 million people worldwide that are affected by Neurofibromatosis. I
hope you’ll please take a few minutes to watch the video and perhaps
be as motivated as we are to support The Children’s Tumor
Foundation.
Adobe Flash Player is required to view
video.
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