Share stories, laughter and anything else you'd like to in this open topic.
- By JPC · New reply November 27, 2008
- 2 replies
- This is wishing everybody a very Happy Thanksgiving. Enjoy and cherish today with family and friends ...
- By stitcher · New reply November 26, 2008
- 37 replies
- Good morning all, I'm sorry to come and write this, but I just need to vent. I am 51, single, with a daughter, who is 25 and has NF 1 also, because of the NF she has been diagosed as MMR, ok my venting ...
- By JasonTn · Posted November 24, 2008
- 0 replies
- hello i am needing some help i want to get some skoal snus but they only sell it at sheetz store right now if their is a store near i will pay you for them if you would get them for me thanks you post ...
- By Steeler_fan_Roger · New reply November 21, 2008
- 6 replies
- My wife died two years ago from complications related to NF at the age of 31. Now my eight-year-old daughter has a large bump on her forehead and another small one on her lower lip. My feeling has always ...
- By banana1946 · New reply November 20, 2008
- 4 replies
- Hey Everyone, So I hope I don't step over any boundaries or personal space in asking this question, but I have to know if its just me, or if its a part of NF. I was diagnosed with NF1 at 3, I am now 28 ...
- By grannyj · New reply November 20, 2008
- 4 replies
- My husband and I have been making a will recently. One thing I would like to do is leave my body for medical research. Does anyone out there know how to do that for NF research? Who/where would I contact ...
- By MaggieC · New reply November 20, 2008
- 1 reply
- Not quite off topic as my beloved aunt and godmother and her daughter, my big cousin, my favorite cousin have NF. The tumors did not appear until my aunt (deceased now for over 30 years) was in her late ...
- By stitcher · New reply November 18, 2008
- 21 replies
- Good Morning everyone,, It's 8:40 am Sunday morning,, we are missing church,,, I've been sick and now my daughter has it,,, bummer,,, hopefully we will be up and back around soon,,, I just was wondering ...
- By dad1963 · New reply November 15, 2008
- 11 replies
- How Do I get help for my kid in schools. She has nf and has problems lewarning ...
- By KAM111 · New reply November 14, 2008
- 4 replies
- I am very good at giving massages and I only charge $20.00 per hour...sweet dill right? I plan to mager in being a mussoor, I also am gifted with the cooking talents. fill free to talk about anything ...
- By Markjh · New reply November 12, 2008
- 3 replies
- I'm headed to Las Vegas for Christmas this year. My dad died in August 2006 and mom in Feb. 2007. I sort of wanted to get out of town last year but I couldn't motivate myself to go anywhere. This year ...
- By inmemoryofjoval2007 · New reply November 9, 2008
- 12 replies
- gosh, I hate NF so much. I am so missing my daughter right now. It hurts so bad. She was my best friend. The stupid NF is the reason I no longer have her. Now, I am left with kids that disrespect me ...
- By sherodsaunt · New reply November 7, 2008
- 5 replies
- My nephew sherod has NF1 and was recently diagnosed with MPNST (Malignant Peripheral Nerve Sheath Tumors) he has just finished his third round of 3 day chemo treatments. We have had several fundraisers ...
- By momof4boyz · New reply October 30, 2008
- 4 replies
- I was woundering if anyone can tell me how much sleep a 22 month old should be getting. im asking because my son is sleeping about 13 hours at night and then takes a 3 hour nap in the day we asked the ...
- By moonlight1964 · New reply October 26, 2008
- 2 replies
- Hi, I'm 64 with NF1. I have recently tried to get long term care insurance but was turned down because of my NF. Has anyone else had this problem or do you have any suggestions? At this point and time ...
- By LoriNei · New reply October 19, 2008
- 14 replies
- My daughter in law appears to have NF1, even though she and her family do not know it. She is pregnant with my first grandchild and I am obviously concerned. Does anyone have pictures they could send ...
- By honor · New reply October 14, 2008
- 9 replies
- Aside from the Camp New Friends are there ever any meetings or conventions of people with NF. Some place where we can all get together and talk or have Drs. come in and talk to the group that kind of ...
- By mustangjenny1966 · New reply October 1, 2008
- 8 replies
- I have met over 200 people with NF in chat rooms, the Texas NF camp every year and for the last 4 years, I have hosted an NF'ers (that is what we call ourselves) get together in the St Louis area, the ...
- By cmch07 · New reply September 27, 2008
- 9 replies
- My husband's brother had neurofibroma and died (due to his disease) many years ago. When my husband was young, his parents had him tested after his brother's diagnosis. They said he did not have the disease ...
- By Debbie02 · New reply September 27, 2008
- 1 reply
- San Francisco NF Symposium Please join us on October 11!! This event offers something for everyone – regardless of the extent of your experience with NF. Whether you just learned about Neurofibromatosis ...
