NF Smarty Pants

Archive for September, 2008

I received this message from NF, Inc.

Urgent request!

The most important thing we can do to promote NF research is to tell our Representatives in Congress that we need their help. If we don’t tell them, they don’t know!!

We have just learned that the next 48 hours are a critical time in the Defense Appropriations process. We are trying desperately to save the Department of Defense Neurofibromatosis Research Program (CDMRP) in these, the most difficult economic times for our country.

Please take 5 minutes to call or write to your members of Congress. Ask them to contact Congressmen John Murtha and Bill Young in the House, and Senators Daniel Inouye and Thad Cochran, in the Senate. Have your representatives ask Murtha, Young, Inouye, and Cochran to provide $20 million for Neurofibromatosis research through the Army’s NF Research Program in the Fiscal 2009 Department of Defense Appropriations bill.

To find your Representatives, go to this site and send a message. If we, the members of the NF Community don’t do this, who will?

The Children’s Medical Center at Winthrop University Hospital (Mineola, NY) has gained a slit lamp. This will allow ophthalmologists to better examine the structures at the front of the eye. The devise is helpful in diagnosing and tracking neurofibromatosis in children.

Crain’s New York has a story about how researchers are finding it easier to get funding for specific diseases like neurofibromatosis. Through researching the diseases that are more rare, scientists can find results that also pertain to the more common ones, such as cancer and high cholesterol.

Robert Garrison is running in the Grand Rapids Marathon as a part of the NF Endurance Team in honor of his nephew, who has NF.

In addition, he has put up on eBay Eminem’s mailbox from the star’s old house in Sterling Heights. The auction will end on Saturday morning.

Westchester Park
7000 W. Manchester Blvd.
Los Angeles, CA

The Children’s Tumor Foundation is holding the 3rd annual LA Walk on Saturday, September 20. The 5K walk is followed by a raffle and food. Registration is $35. Leashed dogs are welcome for an additional $5.

Friends Fore Friends is the golf fundraiser for the Texas NF Foundation. Here is the information from their event page:

AGENDA
11:00 – 1:00 Registration Opens /Sunglass Fittings
12:00 – 1:00 Boxed Lunches Available
1:00 Shotgun Start
5:30 Cash Bar Opens
6:30 Awards Dinner

TOURNAMENT FORMAT AND RULES
Four-person Florida scramble. USGA rules. Friend Packs may be purchased at registration and amongst other items include two mulligans and a one time 12 inch “gimmie putt”. Mulligan and gimmie putt can be used on any hole except those with prizes.

HOLE-IN-ONE PRIZES
$20,000 Cash Hole #6
Choice of Calloway BB 460 or X-20 Irons Hole #2
Choice of Airline Tickets or Cruise for Two Hole #14
Choice from Premium Electronics Package Hole #17

AWARDS DINNER
Immediately following play, there will be a buffet dinner with awards and prizes for the winning teams and holes.

RAFFLE & SILENT AUCTION
Star Power has generously donated a LCD television for our raffle. Chance tickets are $5 each or five for $20.

In a study of glioblastoma multiforme (GBM), a deadly and common form of brain cancer, researchers may have discovered why this cancer is so resistant to drug and radiation treatments. Patients diagnosed with GBM only live for one year on average.

Traditional cancer treatments focus on the main pathways of cancer formation. Thanks to the Cancer Genome Atlas project, scientists are seeing a far bigger picture than they have ever before. Three gene mutations, previously unknown as causes for GBM, are now acknowledged as contributing to its growth and development:

1. the NF1 gene
2. the ERBB2 gene, which is involved in breast cancer
3. and PIK3R1, which is involved in insulin production and was not known to be a part of tumor formation at all

These three previously hidden pathways now give researchers additional information to develop effective treatments.

To read more about these findings, please see:

• Baylor College of Medicine article
• Dana-Farber Cancer Institute article
• Genetic Engineering & Biotechnology News

10th Annual NF Golf Tournament
Hickory Hill Golf Club
200 North Lowell Street
Methuen, MA

9:00 – 9:45 AM
Registration
Coffee, Continental  Breakfast
Warm up

10:00 AM
Shotgun Start – Scramble

3:00 PM – 5:00 PM
Barbeque Dinner,
Awards, Raffle, Silent Auction, Drawing for our Cash Raffle

Register with NF, Inc.-New England.

Thomas Beach
Lake Calhoun
Minneapolis
9:30 am – 11:30 am

For more information, please visit NF, Inc.-Minnesota’s website.

On August 31, NF, Inc. Mid-Atlantic held their Shipley’s Choice Swim-a-thon. At least 120 swimmers swam over 14500 laps over a 12 hour period. This is more than six-times greater than last year’s 2115 laps. So far, the amount raised is $15000 and still climbing.