“Race the Lake for NF Research 10K”

Saturday, August 6 · 9:00am – 12:00pm

Pillar Point, New York, 23169 Kitto Marina Drive, Pillar Point, NY

Please join us for the 10th annual Race the Lake for Research 10K to fight neurofibromatosis! The race begins and ends at our family marina: Kitto’s marina in beautiful Pillar Point (just outside of Dexter, NY).

The 10K is a nice loop that finishes along the lake. Afterward, relax and enjoy the marina festivities: a pancake breakfast (made to order!), swimming, and relishing in the fact that you made a difference + had a great time-all before NOON!!!!
For more information you can e-mail me @:nfracer@twcny.rr.com
info: 315-639-6043, Diantha Kitto Velasquez.

For more info, click here!

Just Ask! T-Shirts

The shirts say you care. Order yours here!

If you’d like to order your very own, “official” JUST ASK! t-shirt, you’re at the right place. T-shirts are available in adult small, medium, large, X-large, 2X-large and 3X-large. The men’s shirt is available in yellow, and the ladies shirt is available in blue, pink. or plum, with a fitted waist and a v-neck. Cost is just $15 per shirt + $5.00 shipping / handling with all proceeds going toward increasing awareness of neurofibromatosis. Thanks for supporting Just Ask!

Order t-shirts here!


Order Just Ask t-shirt

Dr. John Slopis, NF Update, Texas NF Foundation Symposium on Neurofibromatosis, 8/7/10

John M. Slopis, M. D.

Present Title & Affiliation

Primary Appointment

Associate Professor, Department of Neuro-Oncology, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TXMedical Director, Neurofibromatosis Program, Department of Neuro-Oncology, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX Continue reading


Tonight was very special as the Discovery Channel was in town filming a documentary about Reggie. Thanks to our dear friends at Saltgrass Steak House, the Psych Ward Sirens and all of our friends at the Houston Roller Derby, for making this an evening Reggie will never forget!

Toni Niece, of Saltgrass Steak House, gave us permission to shoot some interviews at their restaurant on I-10 @ Campbell Road. Thank you, Toni, the restaurant was perfect, the food excellent and the staff incredible! Our waiter, Chris, was outstanding and took wonderful care of us. Also, thank you for the delicious appetizers! That was completely unnecessary but totally appreciated!

Saltgrass Steak House Rocks!

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)

More photos right here

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.

Doodle Day 2010 is here!!

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.

Hi Reggie,

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.

Reggie Bibbs

Sarah Silverman #1

Sarah Silverman #2

Kevin Nealon

Sugar Ray Leonard #1

Sugar Ray Leonard #2

And this is the link to NF, Inc.’s eBay page with all the doodles



(Reprinted from Doodle Day USA website.)

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.

Reggie’s Doodle