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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.
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Journals
Proton Therapy treatment for NF tumors?
- By mie · Posted November 15, 2009
- 0 replies
- Is there anyone who has been Proton Therapy treated for NF tumor ...
would like to talk with othercaregivers
- By kellyjoe · Posted November 15, 2009
- 0 replies
- my husband is 41 and recently had a chemical spill at work that left him with a brain injury causing a type of dementia we have a 20 month old daughter looking for other caregivers to talk with that might ...
Look-alike Phenomenon
- By jerecare · Posted November 15, 2009
- 0 replies
- As I get older, it seems like people are looking the same. I find myself saying "hey, you look like someone." I meet sign language interpreters frequently. I met "Glenn Close", "Johnny Depp". Even have ...
- By LumpsandBumps · Posted November 13, 2009
- 3 replies
- I tweeted Dr. Jim Sears from the show The Doctors and here is what He tweeted back @DrJimSears @THEKNOTTYMAN I take it from ur name that u have first-hand experience w/ NF... Seems like u hav a good attitude ...
Can't sleep...
- By guilty_spork · Posted November 13, 2009
- 4 replies
- Insomnia sucks. Its nights like tonight that my mind wanders back over the years, over the nights like tonight that seem so close. I look back at those moments like old photos and stare at the kid in ...
Is there anyone who has, or has experience in particle therapy?
- By mie · Posted November 12, 2009
- 0 replies
- I have a tumor in the optic nerve and were referred for radiotherapy, since it is a sensitive area I have investigated what other options there are, I found a report on particle therapy, which sounds ...
Removal of Neurofibromas
- By CRUEHD · Posted November 11, 2009
- 4 replies
- I just had 3 bumps removed from my arm today. This is the first time I actually saw then entire process from start to finish. It was pretty wild. After having major surgery last year, I never knew the ...
Is there anyone who has had radiotherapy to their optic nerve?
- By mie · Posted November 11, 2009
- 1 reply
- I was told at the hospital today that the tumor I have on the optic nerve is beginning to press, they will not operate it because they think there is too much risk in it, but instead refer me to radiation ...
A Run For A Cure>>>
- By The-Dreamer · Posted November 10, 2009
- 0 replies
- Nick Folk, the Dallas Cowboys Pro Bowl kicker, has partnered with the Children’s Tumor Foundation to “Kick for a Cure†to neurofibromatosis (NF), a progressive disorder his 11-year-old cousin, Blake ...
Shoes
- By NF238801 · Posted November 10, 2009
- 1 reply
- My left leg (the bad one), is one inch longer than my right. It cost 90 bucks to have the lift put on my shoe. Does anyone know where a cheaper place to get this done at ...
Reply to "scutiny" post
- By guilty_spork · Posted November 10, 2009
- 18 replies
- Since jerecare closed his query to relies, I'll post this. The mods get tired of playing babysitter to us I think. As somone wo has been on the recieving end of MANY deleted posts, I can say that they ...
Carrots, Eggs & Coffee
- By jerecare · Posted November 10, 2009
- 0 replies
- A carrot, an egg, and a cup of coffee...You will never look at a cup of coffee the same way again. A young woman went to her mother and told her about her life and how things were so hard for her. She ...
doc
- By grammy615 · Posted November 10, 2009
- 1 reply
- went to the docs he has me going to get test done. i'm losing stregth in my hands. and he said that he hasn't heard of any thing that can help to take them away, or help them for coming . so if any body ...
Update on my son's surgery of a plexiform
- By vandyson · Posted November 10, 2009
- 1 reply
- I hope this finds everyone doing well. It has been awhile since I have visited this site. As some of you know my five year old son had surgery on a plexiform in his hip/leg area. Surgeons was not able ...
radiation at a tumor at the optic nerve?
- By mie · Posted November 9, 2009
- 1 reply
- I was told at the hospital today that the tumor I have on the optic nerve is beginning to press, they will not operate it because they think there is too much risk in it, but instead refer me to radiation ...
fav youtube videos
- By jerecare · Posted November 8, 2009
- 9 replies
- http://www.youtube.com/watch?v=dpf2hsZGs JM ...
Support
- By jerecare · Posted November 8, 2009
- 2 replies
- I've been accused of being unsupportive. I think it was an unfair accusation, so I want you to tell me how YOU like support and encouragement. Some people might like more hand holding. Virtual hugs. Nothing ...
Disability
- By gigglebox · Posted November 7, 2009
- 17 replies
- I am so so excited!!! After a year of waiting i got approved. I didn't even get the ususl first denial. I needed the insurance so bad. Now maby i can get to a doc that can be more help. Or will it be ...
in lieu of medicine
- By jerecare · Posted November 7, 2009
- 14 replies
- Orange juice was my elixir of choice for a long time. We had to get the off-brand kind to save a few pennies, but it wasn't that good. Usually I will eat/drink anything (except alcoholic), but I've become ...
Happy to have found Inspire
- By carly4 · Posted November 7, 2009
- 3 replies
- I have yet to actually meet anyone who even knows what NF is let alone information about it . I find it very hard to explain the condition to people- so i just dont even try. Thanks again for all the ...
