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12th Carolyn Farb Lecture in Neurofibromatosis – Monday, June 14 – MD Anderson Cancer Center

12th Carolyn Farb Lecture in Neurofibromatosis

Whats new in Neurofibromatosis?

Of mice and men: Mouse models of NF-1 and human clinical trials

Kathryn North M.D., F.R.A.C.P.
Douglas Burrows Professor of Paediatrics
Associate Dean Children’s Hospital at Westmead
Head, Institute for Neuroscience and Muscle Research
University of Sydney
Sydney, Australia
Monday, June 14th
12:00 noon
Hickey Auditorium
11th floor
UT M.D. Anderson Cancer Center

Box lunches will be available for the first 50 attendees

Kathryn North is Head of the Institute for Neuroscience and Muscle Research and Associate Dean of the Clinical School, The Children’s Hospital at Westmead. She is also the Douglas Burrows Professor and Head of the Discipline of Pediatrics and Child Health, Faculty of Medicine, University of Sydney. In 2008 was honored by the Human Genetics Society of Australasia for her achievements in genetic research. She is currently a member of the Children’s Hospital Research Executive and Research Committee, and the University of Sydney Medical Deans Advisory Committee. She is Chairman of the Genetics Sub Committee of the Australian Association of Neurologists.
Dr. North is widely acknowledged as a world leader in Neurofibromatosis research.

Anyone who wishes to meet privately with Dr. North during her visit please contact Bartlett Moore (713-794-4066) or Tracey Martin (713-792-6227)

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NF Lobbyist in Washington needs our help!

Here is a link to past your draft letter

DRAFT Senate Support Letter

Dear friends,

I received this support letter template via email from our neurofibromatosis lobbyist in Washington, D.C. She asks that we distribute this letter to all our friends of NF so they can sent it to their congressperson in D.C. This letter is the result of our meetings earlier this year when I went to talk with the senators and Army people to continue funding for NF research. This is very important and I know everyone with NF will want to help. Thank you.

Reggie

Okay, this will remove the last barrier to 100 percent compliance with Sir Reggie’s command. Here is a website with names and addresses of all 100 Senators. http://www.senate.gov/general/contact_information/senators_cfm.cfm – Bart Moore

The Honorable (Senator’s Name)

(Office Address)

Washington, DC 20510

Dear Senator (Name):

As someone closely touched by Neurofibromatosis (NF), I write to request your support for the Army’s Neurofibromatosis Research Program in the Fiscal 2010 Department of Defense Appropriations bill. The House of Representatives included $25 million for NF research as part of the Congressionally Directed Medical Research Program (CDMRP) for FY2010, and I write to encourage the Senate to also include $25 million for this program when the FY2010 Defense Appropriations bill is considered. Significant advances in NF research have been made, due in large part to the Army’s program, and leading researchers are now on the threshold of a treatment and a cure for this terrible disease. Continue reading NF Lobbyist in Washington needs our help!

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Clay Walker at the Houston Livestock Show and Rodeo, 3/14/08

2334667510_e3fa1648da_b.jpgWow! Tonight I was invited to the Rodeo once again. It was a more then Terrific night. The music was the best I’ve heard so far. Clay Walker sang all of my favorite songs and encouraged everyone to join in. Pretty cool. It was cool to see him ride a horse to the stage. A real Texan.2334669090_750680bb56_b.jpg

A big thank you to Laurie Selzer, from MNI (Media Networks Inc) for allowing me to join them in the Verizon West VIP suite. The food was terrific. I wish I knew everyones name I would love to say thank you for the wonderful treatment.

Here are a bunch of photos I took tonight. I hope to add everyone’s names to these when Lou gets them from Laurie!

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Rodeo Night With Martina McBride

2319566597_7713960437_o.jpgTonight was another great night at the Houston Livestock Show and Rodeo!

I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.

Click here to see photos from today!

I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.

I know why she loves Houston. I feel it every time I go out. So many 2319607191_9a1724b37f_o.jpgpeople here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!

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Boy with neurofibromatosis brain tumour defies the odds

(Reprinted from the Standard Freeholder, Ontario, Cananda)

Devon - Boy with neurofibromatosis brain tumour defies the oddsBoy with brain tumour defies the odds

Trevor Pritchard
Local News – Saturday, May 26, 2007 @ 08:00

On the rare occasions he’s not giggling or laughing, it’s apparent five-year-old Devon Payette’s speech is slightly garbled.

His bright red hair is shaved close to his skull, where he has a four-inch scar, and he stumbles slightly as he walks – possibly the result of being blind in one eye. Continue reading Boy with neurofibromatosis brain tumour defies the odds