Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
News, research and advocacy
Share news about neurofibromatosis, new research, information about upcoming advocacy events and ideas for increasing awareness.
Latest Treatment for Neurofibromas
- By WayneK · New reply September 15, 2009
- 50 replies
- I was diagnosed with NF 20 years ago; I am 36 years old and suffer from many neurofibromas on my arms, chest, and back. They recently started coming on my face. I heard about CO2 laser treatment to remove ...
NF and famous people
- By mustangsally510 · New reply September 11, 2009
- 16 replies
- o.k., I've just been doing my homework on the internet... my suspicions are somewhat true... Robert Redford does have some form of NF... Ok, how do we go about reaching out to him??? He is so famous and ...
a beautiful website
- By imamann · New reply September 4, 2009
- 6 replies
- i found this website by accident, but it is amazing...this man travels around seeing the beauty in everyone and taking pictures of them....nf is on there...check it out! www.positiveexposure.org enjoy ...
Celebrities with NF
- By uk_dave_85 · New reply September 2, 2009
- 48 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 ...
Do you think they are looking for a cure?
- By Skittles84 · New reply September 2, 2009
- 38 replies
- There are so many other well known diseases out there like aids,cancer ect. I wonder if they are really looking into it and any of us will see it in our lifetime. That would be a dream come true ...
you tube video
- By rbhalvco · New reply August 26, 2009
- 7 replies
- you all must see this one when i Feel down and out i thank God for his GRACE this lady is a Blessin i know there are many other heros out their she is mine http://www.youtube.com/watch?v=JtrP6Okkt 24 ...
Cyberknife?
- By hh5 · New reply August 21, 2009
- 8 replies
- Anyone had any treatment with the Cyberknife ? Like does it work? All I know is that it send precision radiation on the tumor. But some says our tumor is in our genes and can regrow any time it wants ...
Health care reform and the future of our kids
- By zbelle · New reply August 19, 2009
- 1 reply
- I am a pharmacist in Illinois and have a 7 year old daughter with NF. Currently the symptoms she has has been manageable. She has some learning disabilities and hypotonia which the neurologist assoc ...
Photodynamic therapy for plexis
- By CindyLouWho · New reply August 15, 2009
- 4 replies
- Just wanted to share an article that came out today. I've been following PDT for awhile and think this might have some potential and can't wait to hear how the trials eventually turn out. http://www.earthtimes.org/articles/show ...
MTV-true life i have Nf
- By theBirdicus · New reply August 12, 2009
- 12 replies
- http://www.nfinc.org/mtvcasting.shtml ...
possible cure for neurofiromatosis
- By mikemartinez · New reply August 11, 2009
- 8 replies
- http://www.naturalnews.com/026158_propol is_tumors_cancer.html ...
Schwannomatosis corrections
- By Jeff-T-P · New reply August 11, 2009
- 6 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 ...
NHC
- By PVA · New reply July 20, 2009
- 6 replies
- How many of you are up to speed on this new healthcare reform that the dear president wants to enforce? If this passes, we are up the creek! They are saying that the elderly and critically ill patients ...
Huntington Beach July 18th
- By JaxonsMom · New reply July 20, 2009
- 3 replies
- Just thought I would put in a last minute plug for the get together at Huntington Beach on Saturday. I wasn't sure if our family would make it, but now that we are packing, it's time to get excited! For ...
low phosphate diet?
- By beautifulkana · New reply July 18, 2009
- 2 replies
- I've heard rumors of low phosphate diet as a way on controlling some NF symptoms. I've done some google searches but haven't be able to find much info. Has any one tried or heard of this or any other ...
question
- By diddiekitty · New reply July 8, 2009
- 3 replies
- has any on here that has a child/ or children that have ng before finding that hadit did there have prolbems with bladder in fection or ottherehealth issues? also does any one kn ow if nf goes along with ...
Pain Treatment - Have you tried this?
- By 3Pacers · New reply July 8, 2009
- 4 replies
- http://www.webmd.com/pain-management/rad iofrequency-ablation Has anyone tried Radio Frequency Ablation to relieve pain? Thanks ...
NF Hero Julia Perfetti to be on the Today Show, Thursday July 2
- By LumpsandBumps · New reply July 3, 2009
- 13 replies
- http://ctf.org/Living-with-NF/nf-hero-ju lia-perfetti-on-to-be-on-the-today-show. html Six-year-old NF Hero Julia Perfetti and her mother, Laura, will be featured in the "Everyone has a Story" segment ...
Natural Remedies & Treatments?
- By Hope2BMD · New reply June 27, 2009
- 1 reply
- Are there any natural remedies and/or treatments that anyone has tried for any of the various NF symptoms? How would you rate their effectiveness? Two things I'm particularly wondering about is the use ...
keep on smiling
- By jacinta · Posted June 21, 2009
- 0 replies
- I am trying to get other parents and adults who have this to bring new research to doctors and group meetings here at the hospital any body know how to start? From what I can tell there is only one littel ...
- < Previous
- 1
- 2
- 3
- 4
- Next >
