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

PHOTOS

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!

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Jill Lyons Cannon and Family at Airport

My trip to Salt Lake City was the best ever. I met Maurice, his wife and kids. Brenda, Maurice’s mom is an amazing lady. I felt so welcome when I walked in the house. The kids and family members made me feel at home. Maurice and I really had a great talk, fun conversation. Amazing how we both have the same thoughts about  we live our lives.  I know I was bless by this family. Found new friends,  that I will always keep in contact with.

MORE 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)

I thought, I would write about man’s best friend.  His dog.  I’ve had Shiner for three years now. Never knew how much a pet can really help you when you are in a down mood.  Shiner is my rock. My best friend.

Shiner is a white Lab that follows me around everywhere. From room to room. Never complains. And best of all, he likes me.  And even though he knows how to open my drawer and steal my snacks, he’s still my best friend. Hope he doesn’t learn how to open the freezer, and get my ice cream.

I’m so thankful to my friends, Connie and Jaen Lawrence, for making it possible for me to have Shiner. There is also another dog in my life (don’t tell Shiner!) that shows me the love always!  His name is Stanley. He’s not my pet but when I visit my friends, Rie and Elena, I get to see Stanley and he spends the whole visit loving on me. Great dogs and best friends, both of them!

Lets talk about our pets here. Who has a pet, and what is his or her name?

Lou and I went to the Psych Ward Siren Fundraiser. It was the perfect thing to do today. I had a terrific time with great friends.  What made it fun, was I had a chance to talk to the siren’s away from the ring. It was my  time to be there  supporting a team that have been there for me, Supporting my Just Ask campaign.  Also I met a few new friends. Jimmy Brewer, and his Brother. Jimmy’s brother introduce me to the band. If you like the bag pipes, you will love this band.  The music was great. They played Amazing Grace. That was  the best.  Houston Highlanders Pipe Band. I can get you in contact with them if you are needing a Bag Pipe Band.  Enjoy the photos, and yes I was playing the bag pipes  NOT!

Doyle Brunson #1 (The Legend of Poker: 10 Time WSOP Champion)

Doyle Brunson #2

Bruce Robison (TX songwriter & recording artist)

Kelly Willis (Alternative Country’s Golden Goddess; wife of Bruce Robison)

Darden Smith (TX singer-songwriter – “Loving Arms”, “Levee Song”)

Sara Hickman (Official State Musician of TX)

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.