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

Dear NF friends,

For the past several years researchers have suspected that there is a higher risk for breast cancer in individuals with NF1.  This research has now come to Michigan.  Dr. Xia Wang at Henry Ford Hospital is working on a grant from the Department of Defence to study breast cancer in NF1.

If you or a family member with NF1 has had breast cancer, regardless of how long ago, please consider contacting Dr. Wang to help her gather data.  Simply email her at xwang1@hfhs.org.  She’ll send you all the information you need to decide whether you wish to participate.

You may also contact Dr. Wang by phone:

Xia Wang MD, PhD, FACMG
Department of Medical Genetics
Henry Ford Health System
3031 W. Grand Blvd., Ste. 700
Detroit, MI 48202

Tel    (313) 916-3188
Fax   (313) 916-1730

Warm regards,

Rosemary

Rosemary Anderson
President
NF, Inc. Michigan
NF Support Group of West Michigan
nfwestmich@aol.com
616-451-3699

Rosemary Anderson, Grace Hanlon and Reggie Bibbs.

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 -

Rosemary Anderson
President
NF, Inc. Michigan
NF Support Group of West Michigan
nfwestmich@aol.com
616-451-3699

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.

Testimonial Video

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 patty@terraceuticals.com. (more…)

PHOTOS

12:16am (CST) 5/8/09 Late tired and going to bed. Tomorrow Matt and I will hit the radio waves.
Matt owns a few radio stations and he wants me to go on the radio with him.  I also will be meeting with Gillian Andersons mom tomorrow. She Told Debbi she wanted to take me to lunch. Debbi said everyone wants to meet
you. We are making a difference. I will check back if you write me back. I have a computer in the room. This is me most awesome home I have seen. I will have photos so don’t worry.

9am (CST) 5/8/09  – Reggie just called in and he’s having a great time in Grand Rapids, Michigan. So far this morning, he has been interviewed on four radio stations in the

10:39 am (CST) 5/10/09 – Lunch with Rosemary Anderson. In the photo of Rosemary and me, you will see Grace, Debbie and Matt’s daughter. Rosemary said it was ok to post our picture. She is a wonderful lady.

Citadel Broadcasting network:

WKLQ-FM (Grey & Kluck Show)
WLAV-FM (Kevin Matthews Show)
WTNR-FM (Scrubs in the Morning)
WHTS-FM (The Todd Chance Show)

Reggie’s Interview on WLAV-FM

Reggie’s Video Presentation to Group

Neurofibromatosis Support Group of West Michigan

Gillian Anderson Website