Neurofibromatosis Cafe A place to talk, have fun and share.

Received this yesterday:

Hi Lou,
My name is Patty Hall and I’m a research director recruiting people with NF1 for a double blind, placebo based study investigating certain nutrients in the treatment of symptoms of NF1. Attached is a copy of the protocol for your consideration as a post.  I need sixty patients and the study is of no cost to participants.

Neuropathy Solutions is currently seeking 60 patients with Neurofibromatosis 1 to participate in a double blind, placebo-based study investigating the use of nutrients in the treatment of symptoms related to NF1. Study participants should be:
1. Ages 13 and older.
2. Have a diagnosis of NF 1 based on NIH criteria with two of more of the following characteristics.
a. Six or more café-au-lait macules
b. Skin fold freckling of the axilla and groin
c. Optic pathway glimoa
d. Two of more Lisch Nodules of the iris
e. Distinctive bony lesions such as dysplasia of the sphenoid wing or the long bone of the tibia.
f. Two or more neurofibromas of any type or one or more plexiform neurofibroma
g. First degree relative with NF1
3. At least four subcutaneous neurofibromas on skin exam with the following qualities; the lesion must be discrete by clinical exam and amenable to measurement with calipers with a minimum dimension of 5mm and a maximum of 20 mm.

Patients will be supplied all study supplement and receive follow up consultations for a period of six months free of charge. If interested, please call Patty Hall at (616) 826-4033 or email her at patty@terraceuticals.com.

Patty Hall, Research Director, Neuropathy Solutions

Happy New Year 2008!!!

Well, a year has passed and we are at a new beginning. I look forward to great things this year. Maybe something new for NF research. Let’s keep hope alive. Now lets talk resolutions. Or promises, or whatever you want to call it. Something I want to do this year is build up my friends list to at least 200 or 300 friends with NF on myspace.com dailystrength.com or youtube.com Any one of the three. Oh yea, one more thing. drink more Starbucks and hopefully meet with some of my friends that I talk with everyday about coffee.

On a serous note. Please remember our real HEROS in 2008 in the U.S. ARMY, and military service members. When you see someone in uniform say thank you.