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
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)
What a great night at the Roller Derby. Please meet my new friends in the photos above. The friends above made the night special f. I don’t remember the little girls name in the photo. She was specially nice, and caring. Seem to be concern about me. I hope she knows that because of her and her Dad and friends I had a terrific night. Thank you for asking about nf, and for taking a photo with me.
Of course it is always fun watching all the roller derby action. All of the teams are good at what they do, Roller Derby, a good place for anyone to go, and get treated as if, you of you are the champs. All the teams treat the fans as if we are playing. Hats off to all of the HRD for treating the so special.
Hooray! It’s National Doodle Day! The eBay auction to benefit NF, Inc. begins today, May 13th, at 6pm ET, 3pm PT, 10pm GMT. We have an awesome combination of celebrity Doodlers and superb artists, illustrators, cartoonists and caricaturists for a total of 161 Doodles!
Before the auction begins, view the Doodles alphabetically or by category at www.doodledayusa.org/gallery/v/2010/.
Once the auction begins, you can go straight to eBay and search on seller nfinccharity or you can click on the eBay link at www.doodledayusa.org.
The doodle auction started about an hour and a half ago!
I have made links that go directly to your auction page as well as the auction pages of Kevin Nealon, Sarah Silverman, and Sugar Ray Leonard.
And this is the link to NF, Inc.’s eBay page with all the doodles
THANK YOU VERY MUCH!!!
Reggie Bibbs is a highly inspirational man living in Houston, Texas. He was born with neurofibromatosis (NF), a genetic disease which causes him to develop tumors on his body. NF can be a subtle disease, but in Reggie’s case it has left him with a disfigured face. After years of public frustration, he launched a unique one-man campaign to call attention to this disease.
“I have neurofibromatosis. It’s a disorder that causes tumors to grow along my nervous system. In my case, it’s fairly disfiguring. When I would go out in public, people would stare or, worse, walk away. So I came up with an idea for a t-shirt and the rest, as they say, is history.”
With the help of a friend at a local advertising agency, Reggie Bibbs created a t-shirt that would invite people to come up and talk to him about his disorder. “I figured the more they knew about my disease, the more they would understand me.”
“When Reggie called me with the idea for a t-shirt that read, ‘Just Ask’, I literally had tears in my eyes, said long-time friend Lou Congelio, president of STANANDLOU Advertising. The idea was so simple and so powerful that I immediately offered him a position in the company.”
The t-shirt features on the front an abstract outline of Reggie’s face and, on the back, large type that simply says,’JUST ASK!’. Also included on the back is the url for Reggie’s website, www.reggiebibbs.com.
Today, Reggie is also on MySpace and Facebook and has an online store on his website. He’s been interviewed by Wikinews too.
Earlier this year, STANANDLOU and Reggie won 2 Gold ADDY Awards, one silver ADDY, and a Special Judges Award for Public Service Adversiting for their new “Just Ask” ads!
Reggie said, “I am thankful that the work here on the Just Ask campaign is getting noticed. More people will learn about NF as we keep pushing forward. Thank you all for supporting the site with your visits.”
On April 14, 2009, the Just Ask Foundation became exempt from Federal income tax under section 501(c)(3) of the Internal Revenue code.
To learn more about NF and Reggie, visit Reggie’s award-winning website and join him and his friends at the Neurofibromatosis Cafe.
Our friends William Hughes and Matt Jones produced this amazing video to honor Reggie and to help him in his effort to increase awareness of neurofibromatosis. Well done, guys!
I was invited for the second time to attend the Walk With Grace event for the Neurofibromatosis Support Group of West Michigan. I’m thankful to be included. I will be a guest at the home of my friends, Debbi and Matt Hanlon. I’m looking forward to the visit and seeing the Hanlon family once again and their beautiful daughter, Grace, as they are very nice people who really care about raising awareness of NF.
The Neurofibromatosis Support Group of West Michigan was founded in January, 1985 by Sue deGroot, MSW, a social worker at Spectrum Health in Grand Rapids. Of the 45 people who attended the first meeting, most had little or no information about NF or were misinformed. Nearly everyone thought neurofibromatosis was a rare disease, and theirs was the only family they knew affected by it. Today we know that NF affects one in every 3-4000 births and is the most common genetic disorder affecting the nervous system.
usually at the Blodgett Campus of Spectrum Health. Families come to meetings from Kalamazoo, Holland, Muskegon and parts in between, as well as from Grand Rapids. Meetings usually feature a speaker on a topic related to NF and ample time to meet people with similar concerns. The annual picnic (last Sunday in July) and Christmas Party (first Saturday in December) are both popular events.
Educational materials are provided free to NF individuals and families and to their physicians, teachers, social workers, etc. Newsletters and email messages keep the membership informed of group activities, research developments, available services, and more. In 2004 the newsletter is reaching nearly 800 households and 400 professionals. The support group is particularly proud of the NF Clinic which opened at Blodgett in 1989 – the only NF Clinic on the west side of Michigan.
It is extremely stressful, even frightening, to have a family member diagnosed with a genetic disorder. The support group wants every person and family affected by neurofibromatosis to have somewhere to call for information and someone to talk to. No one should feel alone in dealing with these concerns.
The goals established for the neurofibromatosis support group in 1988 are still valid and viable in 2004. Our goals are:
1. To provide emotional support for persons affected and their families.
2. To assist NF families in getting appropriate medical care.
3. To educate ourselves and the public about NF.
4. To assist the medical community in better recognizing and diagnosing NF.
5. To encourage research through participation and, for those able, through financial contributions.
A few months back, you may remember the blog asking for your vote so that I could be one of the speakers at SXSW. Well, your vote worked because I will be one of the speakers this weekend. Lou and I head out to Austin Saturday to check in and scope out the place. Then, on Sunday around noon, I will share with the panel how I utilized the internet via my website, blog, and Flickr, YouTube and other resources on the internet to spread awareness of neurofibromatosis. It would be great to see you there. All the information you need, if you would like to attend, is here. Look forward to seeing you. If you live in Austin, definitely send me a message!
By the way, I did NOT write the title of the panel!
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.
Hello, everyone! Well, it’s that time of year again. This Sunday I will be joining NF, Inc. in Washington, DC to represent individuals affected by NF and advocate for continued and increased federal funding of NF Research. A delegation of NF representatives from organizations across the country, will be visiting our Representatives and Senators. They will receive a packet of information describing our requests, and we would like to include personal stories from those who live with NF. We encourage you to send your personal story about how NF impacts you or your family, and how important federally funded research is to you. All stories will be hand delivered in Washington. Please include your name and address on your letter, and fax your letter to (630) 627-1117 or email to [email protected]