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News, research and advocacy
Share news about neurofibromatosis, new research, information about upcoming advocacy events and ideas for increasing awareness.
Experimental Treatment with Pure Alcohol
- By 3Pacers · New reply February 6, 2010
- 25 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 February 5, 2010
- 24 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 ...
nf2 Avastin for treating tumors
- By fabfaye · New reply January 22, 2010
- 23 replies
- Juat wondering if anyone has tried using Avastin treatment to shrink tumors. It was mentioned to me today by my daughters docter. I want to do my homework on it before we decide to go ahead. Any advice ...
NF and Insurance
- By benjaminGIG · New reply January 21, 2010
- 1 reply
- HELLO, my name is Ben and i'm doing a bit of research into insurance (in the UK, as I know the notion of insurance is very different in the states) I work for a small genetics awareness charity and we ...
Fundraising
- By MegaNFer · New reply January 18, 2010
- 6 replies
- I am LOOKING FOR IDEAS FOR nf FUNDRAISERS- IDEAS? At the school where I work there was hat day for Cancer, we sold paper figures for CP. going to do Pennies for Patients (Cancer). A few faculty members ...
Treatments/Surgerys
- By Landongram · New reply January 15, 2010
- 8 replies
- Not sure what catagory I will get the best response from. Anyway is there anyone out there that has tried any of the treatment options from Gleevic to Sorafenib to interferon that has worked signigicantly ...
Avastin
- By Landongram · Posted January 14, 2010
- 0 replies
- I also am wondering about Avastin. I am hearing about people with NF getting offered this. I was told yesterday by a doctor that it is given to cancer patients with colon, liver cancer and melenoma. She ...
Manuka honey? Has anyone heard of this?
- By Adam_B · New reply January 14, 2010
- 8 replies
- Hi Everyone, Just wondering if anyone has heard anything about the following: Manuka Honey fights tumours In June 2007 researchers in Germany found that an ingredient that is found in New Zealand’s ...
Has anyone used Avastin for NF tumors?
- By Thordur · New reply January 9, 2010
- 10 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 ...
Bee Propolis...specifically BIO30
- By Calebmyboy · New reply January 8, 2010
- 7 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 ...
new facebook fan page
- By Kel928 · Posted January 5, 2010
- 0 replies
- Stay updated and meet others with NF in Illinois, Wisconsin, Indiana, Iowa, Kentucky, Tennessee and parts of Missouri. Search for "Neurofibromatosis, Inc. Midwest" on facebook and Twitter ...
Celebrities with NF
- By uk_dave_85 · New reply January 3, 2010
- 59 replies
- Just thought id start this discussion see if anybody knows or heard about a celeb with NF could be a good way for the general public to know and understand it better ...
NF knowledge in South of Argentina (Patagonia)
- By Raulargentina · Posted December 31, 2009
- 0 replies
- I want to share with you that three moto riders will travel 11.000 Km from San Vicente (Buenos Aires province) to Ushuaia (Tierra del fuego province) and go back as hobby but the good new is they will ...
Schwannomatosis corrections
- By Jeff-T-P · New reply December 23, 2009
- 9 replies
- Hello all! I have read a discussion on the number of cases of schwannomatosis there are. The statistics that are listed are confussing. For the record; the proper statisics are the number of cases there ...
sleep paralysis and narcolepsy
- By STLdude314 · New reply December 10, 2009
- 8 replies
- Does anyone else experience sleep paralysis and/or narcolepsy? I do and I wonder if it is related ...
NF ONTARIO
- By clubsoda · New reply December 10, 2009
- 4 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 ...
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 ...
