Dear NF friends,
A month ago I announced Phase 2 of the Neuropathy Rx trials. There are still plenty of openings in the trial. If you attempted to contact Patty Hall and got no reply, please email back to me, and I will pass on your information to her. Some emails did not get through.
Here’s my original announcement again –
NF, Inc. Michigan
NF Support Group of West Michigan
Last year we helped recruit patients for an informal study of the nutritional supplement, Neuropathy Rx, for possible benefits in reducing the size of neurofibromas and preventing the development of new tumors. Read about the product at www.neuropathysolutions.com.
Results from the initial study were very promising, so a second, more formal, study for NF1 patients is being undertaken. The research nurse in charge of signing up participants is Patty Hall, RN. She has written to me:
<< Here are the qualifications for the study we’re starting on Oct 1, so if you could get the word out that I’m looking for 60 patients to follow on supplement or placebo, I would appreciate it. Any interested patients can contact me at 616-826-4033 or through email at [email protected]
Number of Patients-60 (30 on supplement, 30 on placebo)
Ages eligible for Study-13 years and older
Gender eligible for the Study-Both
Patients must have a diagnosis of NF1 based on NIH criteria with two or 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 glioma
d) Two or more Lisch Nodules of the iris
e) distinctive bony lesion 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 NF 1
1) Pregnant or breast-feeding
2) Chemotherapy or Radiation within 6 weeks prior to entering the study
3) Receiving any other investigational agent
4) History of allergic reactions to biologic composition of Neuropathy Rx
5) Participation in Phase 1 of Neuropathy Rx NF trial
At least four (4) subcutaneous neurofibromas on skin exam with the following qualities:
a) each lesion must be discrete by clinical exam and amenable to measurement with calipers
b) lesions should have a minimum dimension of 5 mm and maximum dimension of 20 mm
c) histologic confirmation of tumor type is not required.
Patients with plexiform tumors will also be included.>>
Just to clarify – only half those on the study will be given the real product; the other will get a placebo (sugar pill). Neither you nor the researchers will know which one you’re getting until after the study period is completed.
If you have any question about whether you would qualify, please contact Patty. I’m unlikely to be able to answer your questions.
Best to all,