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

The University Of Texas, Health Science Center, is in the process of conducting Rapamycin clinical trials, to treat NF patients with tumors on the body.  I’m happy to say that I’m one of those being treated.  I feel hopeful as well as others members in my family. My mother and sisters are happy to take part in this study.  Second day in the study, and looking forward to what I believe will be a huge step in finding a cure for NF.   I also plan to give updates on any improvements I see on my tumors.

Anyone needing information about taking part in the study, stay tuned. I will have more information on who to contact in Houston, for The Rapamycin Therapy.

Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

The Carolyn Farb Endowed Lecture in Neurofibromatosis,

“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″

Speaker: Roger Packer, M.D.

Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC

Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.

You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks

Reggie

HOUSTON — (March 4, 2008) — A discussion on neurofibromatosis, a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities, will be presented in a public forum March 25 at The Health Museum of Houston.Neurofibromatosis is one of the most common genetic disorders, occurring in approximately one in 3,000 births.

The forum will feature genetic expert Dr. Maria Blazo, assistant professor of family and community medicine and molecular and human genetics at Baylor College of Medicine in Houston. The parents of a child with neurofibromatosis are also scheduled to speak.

Organized by BCM and Texas Children’s Hospital, the event is part of a monthly “Evening with Genetics” lecture series organized by BCM’s Department of Molecular and Human Genetics. The series offers current information regarding care, education and research about genetic disorders.

The program is free and open to the public. It will be held at 7 p.m. at The Health Museum of Houston, 1515 Hermann Drive. For more information or to register, contact Susan Fernbach at 832-822-4182 or fernbach@bcm.edu

Hi Reggie. I am 23 years old and currently living in Japan. Today
was the first time I had ever seen a woman with NF. I was getting
ready to order food from McDonalds, and I noticed that the woman
in front of me. From behind, I hadn’t there was nothing out of the
ordinary, but I soon noticed her enlarged bottom lip and a bit of
sagging to only one side of her face. It was very intriquing to me
and I instantly became very interested to learn more. I was, as
I’m sure most people are, too nervous to “just ask”, as well as
ask in JAPANESE which is my SECOND language and I did not want
anything to get lost in translation. (more…)

I’m so happy that I am meeting new friends, to share our stories with one another. I asked Katie’s mom Vanessa about the UK. She writes a lot of things I enjoyed reading. I wanted to share them with you. Read below. I’m looking forward to the video, which I hope to post here. Thank you Katie and Vanessa! (more…)

Today I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.

Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.

Today I received a very nice email from John, in Alaska. I am thrilled that what I hope would happen with my site, is happening. Others are learning they are not alone when they see my site as well as other site that support and discuss NF issues. I’m happy that this can be a meeting place to share our stories. We all have stories and anyone with NF is what I would call a real trouper. You are strong and you can make it. Lets support one another. Please read John’s message and give him support. Thank you . (more…)

NZ bee compound gives tumours the buzz-off

By Martin Johnston

Bees collect propolis to seal their hives.

A bee product from New Zealand has been shown to suppress tumours in mice, says a study presented to a scientific conference in the United States.

The researchers at a German hospital tested propolis against tumours that can occur in the nervous system and on skin in a condition called neurofibromatosis. (more…)