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News, research and advocacy
Share news about neurofibromatosis, new research, information about upcoming advocacy events and ideas for increasing awareness.
Has anyone used Avastin for NF tumors?
- By Thordur · New reply November 19, 2009
- 6 replies
- I have NF2 and now the Dr are thinking about a Avastin treatment which is rather new to NF patient (or so i heared.). Is there anyone with NF on this board which has used, or is using Avastin? How is ...
Experimental Treatment with Pure Alcohol
- By 3Pacers · New reply November 17, 2009
- 20 replies
- One of my son's doctors has suggested injecting pure alcohol into his foot where the tumors cause the most pain for him. He thinks this will treatment will numb the nerve the tumor is growing on and relieve ...
Teeth
- By CindyLouWho · New reply November 14, 2009
- 16 replies
- Not long ago, somewhere on here, I reported the results of a study that found that NFers were more likely to have dental issues, cavities specifically. I can't seem to find that thread. Just wanted to ...
New Treatment for Tumors........
- By MIRACLESOCCUR · New reply November 7, 2009
- 1 reply
- Light Sciences lines up $35M in credit, financing November 6, 2009 — 11:42am ET | By Maureen Martino Free newsletter via e-mail Related Stories * LSO rounds up $40M in third venture round * Light Sciences ...
FREE Educational Meeting in Central California
- By JaxonsMom · New reply November 3, 2009
- 3 replies
- Join Neurofibromatosis Inc. California at Children's Hospital Central California for a free educational meeting about life with NF. The meeting is open to the public. Those with Neurofibromatosis and ...
Sme good news on Research for NF Brain Tumors
- By MIRACLESOCCUR · New reply November 1, 2009
- 4 replies
- Medical News Releases > Medical News Releases > Mutation linked to pediatric brain tumor may pave way for targeted treatment By Michael Purdy Oct. 29, 2009 -- Researchers at Washington University School ...
getin something done
- By tn2209 · New reply October 28, 2009
- 2 replies
- i let my nf go for about 12 years and didnt know how serious it was intill i went to th e.r over other stuff and they found alot of tumors on my interinal body and it just started a hole new chapter in ...
Bee Propolis...specifically BIO30
- By Calebmyboy · New reply October 27, 2009
- 4 replies
- I recently was told of Bee Propolis, specifically a product from New Zealand called BIO30. Does anyone have any info on it? It is supposed to be effective in slowing tumor growth and even shrinking the ...
n.i.h treatments
- By tn2209 · New reply October 25, 2009
- 3 replies
- does anybody know anythin about n.i.h treatments ...
From Google Alerts
- By MIRACLESOCCUR · New reply October 23, 2009
- 1 reply
- This was on my google alert page today. http://www.sys-con.com/node/1155475 Patti ...
H1N1 report...very interesting
- By MIRACLESOCCUR · New reply October 21, 2009
- 1 reply
- This is very interesting to those of us that have chosen to NOT get the flu shots period....... http://www.mercola.com/article/swine-flu /Swine-Flu-Update-2.htm ...
Advice needed for children with NF
- By NFKids · New reply October 16, 2009
- 2 replies
- Hello, I am new here, I am the Aunt of 3 young children with NF,ages 4,5,11, and a friend to an 12 year old with NF. All neices and nephew were just found with newly developd tumors on the brain and on ...
Clinical Trials
- By RDPS · New reply October 15, 2009
- 1 reply
- Hello, We are looking for a clinic which is conducting clinical trials for the drug Pegintron in the U.S. or anywhere else. Any information about this trial would be welcome ...
MPNST research
- By CindyLouWho · New reply October 15, 2009
- 6 replies
- Interesting story http://www.dotmed.com/news/story/10456 ...
News Medicaid other aide Receipients Illinois
- By MysticMIkel · Posted October 14, 2009
- 0 replies
- On October 11, Gov. Quinn appointed Michelle Saddler, his current top aide for policy, to head the Illinois Department of Human Services. She will replace Carol Adams, who will now head Illinois's trade ...
Imiquimod Cream for shrinking neurofibroma?
- By OneWeak · New reply October 14, 2009
- 5 replies
- http://clinicaltrials.gov/ct2/show/NCT00 865644 Does anyone know about Imiquimod Cream? There was a trial to shrink neurofibroma's.. wonder if it's helping ...
Curious about Religion/Culture Perspective on NF
- By julieann13 · New reply October 2, 2009
- 16 replies
- I am doing some research about NF. Does anyone have any information about different cultures or religions related to NF? Are they accepting? Do they turn people away that look different or have a disease ...
What do people do to stay positive?
- By MysticMIkel · New reply September 30, 2009
- 19 replies
- At times keeping a positive frame of mind is a difficult thing for me to do. This is especially true when dealing with SSDI, having a low income, and worrying in general about NF's symptoms, in particular ...
NF ONTARIO
- By clubsoda · New reply September 26, 2009
- 3 replies
- If there is anyone in Ontario tNeurofibromatosis Society of Ontario Toll Free 1 866 843 6376 2004 Underhill Court Pickering Ontario, Website is www.nfon,ca Email info@nfon.ca in area 905 683 0811 ...
Social Security Disability Information
- By MysticMIkel · New reply September 20, 2009
- 6 replies
- I hope the following helps people here. In reading numerous posts here, I have noticed that many people have applied and been determined disabled by social security. I have also noticed that many people ...
