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News, research and advocacy
Share news about neurofibromatosis, new research, information about upcoming advocacy events and ideas for increasing awareness.
NF Care In Scotland
- By benjaminGIG · New reply June 18, 2009
- 1 reply
- A new support organisation has been launched for people affected by NF in Scotland - Confer Scotland http://www.confer-scotland.org.uk/ for more details check out their website ...
Tanning & NF
- By RKD · New reply May 29, 2009
- 15 replies
- I tan because I had heard that tanning (Vitamin D)may have theraputic applications. Studies show that folks w/NF1 have dysfunctional VitD metabolism. Go on-line, type in sunlight and NF and you'll find ...
The Neurofibromatosis Association (UK)
- By ukdude · New reply May 29, 2009
- 12 replies
- has anyone form the Uk had any communication the NF association? i have sent them nurmours emails regarding 2010 London Marathon and haven't heard a dickki bird do they still exist? also there website ...
the truth about aspertame
- By PVA · New reply May 19, 2009
- 8 replies
- I have posted a discussion about the possible link to allergies with artificial sweeteners and nf. I know that there is no link but it may help all of us to do research about the dangers of the fake sugars ...
Symposium May 16th in OC, California
- By JaxonsMom · New reply May 16, 2009
- 8 replies
- Is anyone else going to the symposium in Orange County on May 16th? Jaxon and I are signed up! He's excited to hang out with his NF Buddies in the Kids Club. Details and registration information can be ...
Has anyone seen this before?
- By Southern-Girl409 · New reply April 30, 2009
- 10 replies
- I found this on myspace, you DO NOT have to join to see the clip.. http://myspacetv.com/index.cfm?fuseactio n=vids.individual&videoid=4164639 ...
URGENT...It's time to write your Senators
- By 4Kate · New reply April 29, 2009
- 2 replies
- Deadline May 5. Now is the time to contact your Senators to request that they sign onto letters seeking funding for Neurofibromatosis research from the Department of Defense and additional support from ...
A LESSON IN PATIENTS
- By LumpsandBumps · New reply April 19, 2009
- 6 replies
- A LESSON IN PATIENTS. A Must See Video This is where I got my screen name Lumps and Bumps. This video also really made a change in me. It really helped me to accept My NF. A LESSON IN PATIENTS Harvard ...
Help secure NF research funding
- By JaxonsMom · New reply April 16, 2009
- 1 reply
- Email or fax your Congressional Representative today! April 1st is the deadline for members of the House to sign a "Dear Colleague" letter supporting NF research. NF Inc has made it so easy. There are ...
Brain mass removed
- By 1950caregiver · New reply April 3, 2009
- 9 replies
- My aunt was diagnosed with neurofibromatosis - had a brain mass removed in 1963; MRI showed small neurofibromatosis in brain in 2005; nothing was done at that time. She is currently age 93. She arrived ...
NF Research - Letter Request to Representative
- By 4Kate · Posted March 18, 2009
- 0 replies
- Your help is URGENTLY needed to secure support for NF research. Please contact your Representative in the U.S. House of Representatives IMMEDIATELY and request that they sign onto letters seeking funding ...
NF and Insurance
- By benjaminGIG · New reply February 27, 2009
- 2 replies
- Hello, my name is Ben & Im conducting some research on behalf of a charity called The Genetic Interest Group. We are interested in getting some feedback on the issues people with pre-existing medical ...
The tumors keep growing.....
- By TeriesaRodgers · New reply February 4, 2009
- 7 replies
- I need to find my daughter a Doctor who can remove the tumors in the Chattanooga, Nashville, Tennessee or Atlanta Area ASAP. Can anyone help me ...
Obtaining a 504 plan at school
- By 3Pacers · New reply February 3, 2009
- 16 replies
- I am thinking about requesting a 504 educational plan for my son. Does anyone have experience with this? My son's tumors are on his left foot and he limps frequently from the pain. Since he receives a ...
has anyone heard..........
- By cyndie · New reply January 6, 2009
- 8 replies
- I have a couple of questions that may kinda sound silly, but they were asked of me and I did not have an answer. First, has anyone heard of the possibility of passing NF or any other disease along to ...
NF Support Group in Michigan
- By Blaster · Posted December 10, 2008
- 0 replies
- Hi all... While researching a recent program on TLC, about some people with NF, I found a link to the Michigan NF Support Group. ( http://www.nfsupport.org/Home.php ...
Where to start????
- By DaleM · New reply November 11, 2008
- 2 replies
- I am searching for info so that i may find clinics that offer experimental treatment and such. Is there any place to start looking ...
Have you seen this?????
- By brevels · New reply October 21, 2008
- 4 replies
- I just found this on the internet and was wondering if anyone has seen this site. http://www.doctormanukashop.com/dr_manuk a_Conditions.cfm?con_id=12 ...
Urgent Request for NF funding
- By Dakotasmom · New reply September 19, 2008
- 1 reply
- This was sent to me by email tonight. Please if everyone could take some time to contact your members of Congress. We are in desperate need for more NF funding for research!!!! Thanks, April Anderson ...
Boston Area NF Event
- By CatQ · New reply August 20, 2008
- 2 replies
- Hi everyone. NF Inc. Northeast is holding an event on Sunday, September 21 called "Steps 2 Cure NF." It's a road race and health walk -- which I think means a race for runners and a nice walk for walkers ...
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