As hundreds of the world’s leading NF experts convene in Monterey, California for the Children’s Tumor Foundation NF Conference, the largest gathering dedicated to neurofibromatosis (NF), it was announced today that for the first time in the history of the treatment of plexiform neurofibromas (PNs), over 50% of patients saw decreased volume in these inoperable tumors. In a presentation titled “The Promise of MEK: Therapeutics for NF1”, Brigitte C. Widemann, MD, of the National Cancer Institute (NCI), reported that response data in a phase I trial for children an Continue reading Promising Results in Tumor Shrinkage Study Announced at Neurofibromatosis Conference
Kathryn North is Head of the Institute for Neuroscience and Muscle Research and Associate Dean of the Clinical School, The Children’s Hospital at Westmead. She is also the Douglas Burrows Professor and Head of the Discipline of Pediatrics and Child Health, Faculty of Medicine, University of Sydney. In 2008 was honored by the Human Genetics Society of Australasia for her achievements in genetic research. She is currently a member of the Children’s Hospital Research Executive and Research Committee, and the University of Sydney Medical Deans Advisory Committee. She is Chairman of the Genetics Sub Committee of the Australian Association of Neurologists.
Dr. North is widely acknowledged as a world leader in Neurofibromatosis research.
Anyone who wishes to meet privately with Dr. North during her visit please contact Bartlett Moore (713-794-4066) or Tracey Martin (713-792-6227)
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 [email protected]
Patty Hall, Research Director, Neuropathy Solutions
The Group made it to Washington, DC last week which was a task in itself with the winter storm hitting the east cost. The storm was gone, but there was still a lot of snow. Living in Houston, all my life. I have never seen that amount of snow in one place. Most of it was cleared away. It was enjoyable though.
The Neurofibromatosis Coalition team made all of the meetings. I believe all of the meetings went well. The amount requested is $25 million. The same amount requested last year. We were shaved down to 13 million. The Department of Defense (DOD) could have easily awarded more funding for studies, if the funding was awarded. The good news is there are studies that are waiting in line that could help. Write your local and State Representatives and let them know how important funding is…it will save lives for millions of Americans by finding a cure for all types of cancer.
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: