This link will take you directly there:  NF Inc Webinars

Video topics include:

• Talk to your Congressman
• NF1 and school issues
• NF2 with Dr Scott Plotkin
• 10 things everyone should know about NF1

If you have watched any of the webinars, what do you think?  Do you have any topics you would like to see covered?  We invite you to leave a comment below…

Please give 2 minutes of your time - before March 13, 2012 - to fill out this online form, which will generate a letter to your congressman, in support of NF research funding. 

I promise: this is so easy and you can really make a difference.  If you have never filled out one of these forms, you simply choose your state, perhaps type in a few words about your personal story related to NF, hit enter, and away it goes! Pat yourself on the back and feel good about yourself :)

Where: Massanetta Springs, Virginia

When: July 15-21, 2012

Cost: $800 per camper plus transportation.

Now here is some great news: Did you know that NF Inc-MN has a limited number of grants (camperships) available to help families with the cost? 

Important links:

NF Inc- MN camperships/grant page

Camp New Friends, downloadable brochure

Camp New Friends, web page

Video about Camp New Friends:

Come hungry -- this place is known for huge breakfasts! We had a great turn out here last year.

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:

• Natural history studies
• Development of nearly 100 animal models (for example, mice with NF) which allows scientists to study different things about NF, also test new medications.
• Support the development of new medications and treatments
• Establish the Clinical Consortium, which is a network of 9 clinical sites that conduct some of the clinical trials for NF

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.

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:

www.jeffreyowenhanson.com

Consider buying his note cards for your holiday greetings and gifts!  

Camp New Friends - 2011 Photo Album

Are you curious about summer camp for kids and teens with NF?  Click on the link above to see the adventures had this past summer at Camp New Friends, at a site near Harrisonburg, Virginia.  

Interested in sending your child next year? Don't forget that NF Inc, Minnesota has campership grants available, find the application here.

Camp New Friends (CNF) offers children and teens with Neurofibromatosis (ages 7-15) seven days and six nights of summer fun and social connections.

Camp New Friends and all of the camps developed by Children’s National Medical Center’s Brainy Camps serve to reduce the stigma and isolation that is often associated with neurological disorders and chronic health conditions. The camps also provide parents with respite.

Condition specific camps have proven to be an effective way for children to learn more about their condition and to develop adaptive behaviors. At Brainy Camps, children learn from peers and adult volunteers who live effectively with these same health conditions and are offered hope for the future.

Campers participate and choose from activities including hiking, arts and crafts, canoeing, team sports, a low and high ropes confidence course, camp olympics, swimming, yoga and drama. Support groups and educational programs promote knowledge, skill development and social connections

Camp New Friends is sponsored in part by Children's National Medical Center in collaboration with Neurofibromatosis, Inc.

Interested in being on the STAFF at Camp New Friends for summer 2012?   Applications now being accepted.  Click here!

More than 60 walkers showed up and we had nice visibility in our bright red shirts!

 After the walk we enjoyed pizza together in the pavilion. 

There was face painting and a children's entertainer, Tessa.  

Please join us at next year's walk!