Disfigured man wins Jefferson Award
POSTED: Thursday, January 13, 2011
UPDATED: 5:41 pm CST January 13, 2011
HOUSTON — A man who inspires others despite a lifetime of suffering from a condition without a cure is this month’s Jefferson Award winner.
WATCH IT: Man With Disfiguring Disease Inspires Others
FIND IT: www.reggiebibbs.com
Reggie Bibbs was born with a genetic disorder of the nervous system called neurofibromatosis, or NF.It causes tumors to form in the body. For Reggie, it disfigured his face.Reggie’s brother Ronnie also had it. The tumors took Ronnie’s life in 2006.But from tragedy, a purpose was born.”I want more people to understand about NF. I want people to understand me, and I want to bring awareness,” Reggie said.The way to bring awareness on a large scale is on the Internet, so Reggie created a website, a Facebook page and a blog.Now, people with NF can virtually handhold each other about their trials and triumphs.
Reggie did not realize how far-reaching his message would be.”Canada, Australia, London,” he said.The message to those with NF is the same — get out. Get out of the house and give people a chance to get to know them.”I’m just like them. I still have those fears and worries they have, and I let them know that even with those fears, they still have to do it,” he said.He said he knew there would be questions, so Reggie came up with T-shirts that say “Just Ask” and made some cards explaining the disorder.And he started taking pictures with people, even famous ones.”Aaron Neville and the Neville brothers when they were in town,” Reggie said.Words of encouragement flooded in. Continue reading
“My Brand New Face”
Click HERE to view teaser!
In many ways Maurice Simpson is just a regular guy who loves his wife and works hard at his job.
But there’s something about Maurice that sets him apart from everybody else.
Since childhood he’s had a massive disfiguring facial tumor caused by Neurofibromatosis. Amazingly, an anonymous donor has offered to pay for surgery – but before the operation he’ll come face to face with Reggie Bibbs, an NF sufferer whose own surgeries were a failure.
With the tumor so deeply fused with Maurice’s head is surgery too much of a risk for a brand new face?
Maurice Simpson is a family man with a giant facial tumor that he’s never let get in the way of a good time. But now it’s putting his life at risk and Maurice has decided to undergo a dangerous operation to risk everything – for a brand new face.
Check your local listings!
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
Monday, June 14th
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)
A friend of mine and Reggie’s, Jason McElweenie, submitted Reggie’s name to host a panel for next years SXSW: Becoming An Inspiration – One Pixel At A Time http://panelpicker.sxsw.com/ideas/view/2339
The description is as follows:
Reggie Bibbs has been on a one man crusade to raise awareness for neurofibromatosis (NF) come listen to him tell his story and help you and your organization turn your clients and friends into raving fans for your company or group
Here’s where we need your help: This is a 3 step process. A panel is submitted and then placed in the PanelPicker where the public comments and votes on it. After the voting and commenting is done a group of SXSW insiders vote on which ones they like and the board at SXSW also votes on which one they like. If the public comments and votes a lot for this one we have a chance of swaying the other two parts of the in our favor so now we have to promote, promote, promote.
I hope this can further raise awareness for Reggie and NF, speaking to a crowd of early adopters can do nothing but help raise awareness. If this panel is selected I say we plan a sort of media blitz to make Reggie the unsung hero or face of the 2010 SXSW conference. First thing we need to do for Reggie is get him on Twitter I have registered his name http://www.twitter.com/reggiebibbs.
Can you send the PanelPicker link above to everyone you know and ask them to not only comment but also vote for the panel?
This would be an incredible experience for Reggie as well as a great boost to his mission to spread the word about neurofibromatosis.
If you could take a few minutes to help, it would mean the world to me and Reggie!
Per our conversation on the phone, I would like to welcome you to the Honorary
Board of the Texas Neurofibromatosis Foundation. It is a privilege to have you on the board.
The foundation appreciates all you have done for Texas NF and NF awareness.
We look forward to working more with you in the Houston area.
Talk to you soon.
Cindy Hahn, M.Ed., Managing Director, Texas Neurofibromatosis Foundation Continue reading