Saturday, February 18, 2012 at 04:21PM Be sure to check out our "Events" section for details about the upcoming breakfast at Capitol View Cafe!
Come hungry -- this place is known for huge breakfasts! We had a great turn-out here last year.
Thursday, February 9, 2012 at 05:32PM 
Press Release! The Department of Defense NF Research Program will receive $12.8 million for the 2012 fiscal year!
Since 1996, the Department of Defense has appropriated over $203 million for research directed at understanding, diagnosis, and treatment of NF1, NF2, and Schwannomatosis.
Say what?! Department of Defense (DOD) funds medical research?
Yes! Congressionally Directed Medical Research Programs (CDMRP) is a unique partnership between the public, congress, and the military. The CDMRP was established within the US Army Medical Research in 1992, when congress gave the DOD the job of developing and managing a breast cancer research program. This was Congress’ response to grassroots efforts! Since 1992, the CDMRP has grown and includes multiple areas of research, including the Neurofibromatosis Research Program (NFRP).
$12.8 million sounds like a lot! What happens to all that money?
Each year, scientists write up proposals for new or continuing research related to NF. Proposals are reviewed by many people, including scientists, clinicians (doctors, health care providers) and consumer advocates (people who have NF themselves, or family members and caregivers).
Specific research that has benefited from this $$ includes:
About 2/3 of the money is spent in “basic” research, which is done by scientists in the lab. The rest of the money is spent on clinical research (clinical trials), and population based studies (natural history).
The exact amount of money budgeted toward NF research changes every year. The largest amount was $25 million in 2005, and the smallest amount was $8 million in 2008. Since then, the money towards NF research has been rising, but we are a long way from $25 million.
Where do I learn more about this program?
Click HERE and you will be linked to the DOD NF Research Program brochure. There you can learn about some of the research which has been funded in the past.
Wednesday, February 8, 2012 at 04:42PM 
Dear NF Friends and Families,
Please mark your calendar! NF Inc. Minnesota is gearing up for a fun night at the Melting Pot Minneapolis on May 5, 2012. This is a very exciting opportunity to spread the word about NF and help fundraise to support this cause. You can play an important role by partnering with us to provide support, hope, friendship, education and other crucial resources for those with NF in our community.
At the event, we will have a silent auction of themed gift baskets. We need your help in making sure that those baskets are packed full of fun, new items. You can help by donating something that you have purchased or received as a gift (shhh! We won’t tell!), secured as a donation, or consider a financial gift and we will do the shopping for you.
Please help us fill baskets with items in the following themes (see suggested items):
DATE NIGHT (Wine, gift cards to restaurants and hotels, movie or theater tickets)
KIDS(Games, books, crafts, toys, electronics, Nickelodeon Universe passes
COOKING (Grocery store gift cards, Pampered Chef or Tastefully Simple products, cookware, cookbooks, specialty foods, i.e. Trader Joes)
FAMILY FUN NIGHT (Family movies, movie tickets, museum tickets, miniature golf, bowling or water park passes, Underwater Adventures Aquarium)
GAME NIGHT (Games, puzzles, Wii, Xbox)
FOR THE HOME (Candles, picture frames, gift cards to home furnishing stores, e.g., Pier 1, Pottery Barn, Linen-N-Things, or Michaels; wall hangings or decorations
MINNESOTA SPORT TEAMS (Game tickets, shirts or jerseys, hats/caps, trading cards, sporting goods of any kind, collectibles, e.g., autographed items, pictures and/or clothing)
SUMMER FUN (Pool passes, pool toys, zoo or museum passes)
Any additional donations you could make to help support this event would be greatly appreciated. If you need further details about donations or a list of needed items before you make a purchase, please contact Renee Mark at either 612-710-6617 or tayhay5966@msn.com.
Wednesday, October 19, 2011 at 11:13AM Consider participation in research and studies to further the knowledge about NF. Some of these require very little of your time and include:
Learning Disabilities Trial
A trial on the effectiveness of Lovastatin, a common cholesterol lowering medicine is ongoing at several NF clinics nationwide.
NF1 Patient Registry and Genome Project
The Washington University NF Center has a 30 minute questionannaire for NF patients. They are also collecting blood samples from individuals with NF to learn more about the genetics of the disorder in their genome project.
Quality of Life Study
Indiana University is conducting an NF1 quality of life study. Online surveys can be filled out at:
Adults with NF1: www.surveymonkey.com/s/NF1-Adultsurvey
Parents of children with NF1: www.surveymonkey.com/s/NF1-Parent
Youth 14 years or older with NF1: www.surveymonkey.com/s/NF1-teen
Early Development Study
The University of Wisconsin in Milwaukee (Bonnie Klein-Tasman, Ph.D.) is looking for children with NF ages 3 to 6 to participate in a study of Early Development in children with NF1. Call 414.229.2586.
Schwannomatosis International Database
If you have schwannomatosis be sure to check out schwannomatosis.com where you'll find out about the International Database project for schwannomatosis.
Breast Cancer NF1 Study
Dr. Xia Wang at Henry Ford Hospital in Michigan is studying breast cancer in NF1. If you or a family member with NF1 has had breast cancer call 313.916.3188 or email xwang1@hfhs.org to find out more about participating.
This was excerpted from the Fall 2011 NF Midwest newsletter (click the link for the full newsletter).
Monday, October 3, 2011 at 07:58PM 
Talk about inspiring!
Six years ago, at the age of 11 years, Jeff Hanson was going blind from an optic pathway tumor caused by neurofibromatosis. During chemotherapy and radiation, he began painting and selling note cards. He has raised thousands of dollars for NF research and over $355,000 for charities around the world!
Read his inspiring story here on his website, and browse his gallery:
Consider buying his note cards for your holiday greetings and gifts!