Today was a great day at M.D. Anderson Cancer Center. The Texas NF Foundation put on a symposium for NF patients detailing the latest treatment options, research, genetic testing, clinical trials, learning disabilities, and educational partnerships regarding neurofibromatosis. We had incredible presenters: Dr. John Slopis, Dr. Bartlett Moore, Dr. Ian McCutcheon, Dr. Shweta Dhar, Dr. Laura Klesse and Brenda Nelson.

Drs. John Slopis and Bart Moore, Reggie Bibbs and Dr. Ian McCutcheon of M.D. Anderson Cancer Center

PHOTOS

A producer from a U.K. production company, Darlow Smithson, came to town today to begin shooting a documentary about neurofibromatosis. They will be taping Reggie for the next seven days in Houston and Salk Lake City, Utah, along with a fellow NF’er, Maurice. Today, they shot Reggie at home getting ready for his trip to Utah, i.e., ironing, packing, talking about the trip with his mother, Dorothy, and basically documenting a day in the life of Reggie, a guy with NF. PHOTOS

12th Carolyn Farb Lecture in Neurofibromatosis

Whats new in Neurofibromatosis?

Of mice and men: Mouse models of NF-1 and human clinical trials

Kathryn North M.D., F.R.A.C.P.
Douglas Burrows Professor of Paediatrics
Associate Dean Children’s Hospital at Westmead
Head, Institute for Neuroscience and Muscle Research
University of Sydney
Sydney, Australia
Monday, June 14th
12:00 noon
Hickey Auditorium
11th floor
UT M.D. Anderson Cancer Center
Box lunches will be available for the first 50 attendees

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)

Today, Steve Bass (PHOTO ON LEFT) and I will be traveling to British Columbia, for the NF Canada and BCNF symposium. Steve Bass is the owner of srbservices. and  someone who has been a very good friend, is taking time from is business to help me with my travels. This a tremendous help to me when Steve can juggle things around to make things easy for me.   All of this at his own expense, to help a friend, and the Just Ask Campaign.

The Symposium promises to be exciting. Looking forward to seeing my good friend Dr. Riccardi!  Yes, he will be there, and I will have a tough act to follow. I have to speak after Dr.Riccardi (PHOTO TO THE RIGHT).  Not too worried about it. He refers to me as the secret weapon for nf.  Wow, that means a lot coming from someone like Dr. Riccardi.  Stay tuned as we hope to send photos as we get them.

I need to bring Dr. Riccardi a new gold Just Ask! shirt. It would look great with his tan! I mean just look how good it looks on me!!!

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"Just Ask!" Goes to Antartica

A friend of mine, Chad Leathers sports his Just Ask! shirt in Antarctica for a race4 research. nf. Chad and I have been friends for abut a year. He has a great story. If you enjoy good music and concerts follow the link. Tumorators. Chad has  projects going on to help fight for

a cure for nf.  Please visit his page to learn more as to how you can attend one of his concerts. I know I plan to make a surprise visit.  But don’t tell Chad. I want it to surprise him.  Thank you Chad for spreading awareness by wearing  my just ask shirt.

About The Tumornators

The Tumornators is a fundraising team started by the Leathers/Cone family in conjunction with the Children’s Tumor Foundation that is dedicated to raising money and awareness to end. Neurofibromatosis (NF) and Schwannomatosis through research.

On Christmas Eve 2006 while driving back to Georgia from one of Drew’s many surgeries at Johns Hopkins Hospital, the family decided to take a more active role in Drew’s illness. The foundation was born February 2007 when they put together a compelling slideshow telling Drew’s story that, accompanied by a heartfelt song written by Drew’s brother, Ben, appeared on the newly-formed web site.

Thanks to the generosity of people like you, the grassroots campaign has raised over $100,000 to date through fundraisers, donations and with the help of friends like Atlanta Braves right fielder Jeff Francoeur and former NFL player Matt Stinchcomb and New Orleans Saint, Jon Stinchcomb.

All funds raised are donated directly to the Children’s Tumor Foundation so that Drew and others like him can live a life free of the devastating impact of tumors.

Lou and I went to the rodeo tonight and had an incredible night! The highlight of the evening happened rather early like within the first 15 minutes. Lou noticed a nice lady next to us with a baby and she looked like she needed to smile. So Lou started talking with her and before I know it, she’s asks me if I want to hold her baby. I was so honored and so proud and so appreciative of the unconditional trust that she had in me.

Michelle Hickman, you made my day today! Thank you so very much!

Lou took…like, over 120 photos so click below to see all of the new friends we made tonight. And, also, a special “Thank you!” to the soldiers from Fort Hood that were at the rodeo tonight. You are a credit to our nation!

I salute you!

PHOTOS

I got the surprise of my life today. Well it shouldn’t have surprised me. Sugar Ray has always been a supporter of my work in JUST ASK.  Sugar Ray wrote me.  He said, he needs a new Just Ask t-shirt, so he can continue to wear my shirt and help spread awareness of neurofibromatosis when he travels to other countries.  This is great to have someone as famous as Sugar Ray Leonard to be involved with making a difference in the  JUST ASK! campaign.  Sugar Ray always ends his notes by calling me the Champ. Sugar Ray is the real Champ!

Thank you Sugar Ray.

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.

OCT 16, 2009

HEY REGGIE HOW ARE THINGS GOING? I’M IN LONDON HEADING BACK HOME AND I FORGOT TO TELL YOU THAT IT IS MY HONOR TO WEAR MY DEAR FRIEND’S T SHIRT! I LOVE YA MAN BUT YOU NEED TO SEND ME ANOTHER T SHIRT TO SPREAD THE WORD ABOUT YOUR CAUSE CHAMP! ALL THE BEST! SUGAR RAY LEONARD

Guess who is wearing one of my JUST ASK! t-shirts?

You probably already know from the photo you see here. Yes my friend Sugar Ray Leonard. I was so happy when Ray ordered one of my t-shirts. He told me he would be proud to send me a picture of himself wearing my shirt. He kept his word and I have the pictures to prove it. I have known Ray for a long time and he is always supporting my in everything I have done. Imagine someone as famous as him supporting my efforts in NF awareness. He’ll always be the “Champ” in my eyes!

Vote for Reggie Bibbs to host SXSW panel on neurofibromatosis!!!

Reggie has been nominated to host a panel for next years SXSW Conference. His topic: Becoming An Inspiration – One Pixel At A Time.If you all could visit the site and vote, that would be terrific! If you could vote AND leave a comment! http://panelpicker.sxsw.com/ideas/view/2339