neurofibromatosis cafe

A place to talk about NF, have fun and share.


Texas NF Foundation SymposiumToday the Texas NF Foundation had its annual NF Symposium in Houston. It was terrific! I saw friends that I haven’t seen in years. And I met lots of wonderful people that had NF or had someone in the family with NF. I feel blessed to have met them. I guess you could say, I have new friends to email. I was really impressed with how much you can get out of meetings like today. I look forward to the next one. Maybe I can see all of you that I didn’t see today. If you missed it, stay tuned. I may have a few surprises soon. VIDEO LINKS OF PRESENTATIONS COMING SOON!!!



May 5, 2007 - Posted by | Friends, Fun, neurofibromatosis, News, Texas NF Foundation


  1. The speakers were awesome — Dr. Sharon Plum, Chief, Cancer Genetics Clinic, Baylor College of Medicine; Dr. John Slopis, Medical Director, Neurofibromatosis Clinic, M.D. Anderson Cancer Center; Dr. Richard Alan Lewis, Professor, Baylor College of Medicine & Dr. John Oghalai, Assistant Professor, Baylor College of Medicine. Great job, Texas NF Foundation & Texas Children’s Hospital for putting on a great symposium!!!

    Comment by Reggie Bibbs | May 5, 2007 | Reply

  2. Kudos to Cindy and Katie!!! The Texas NF Foundation put on a great seminar with a great line-up of speakers. It’s great getting the latest updates from the very people who are during the work. Nothing gets lost in translation and you can ask questions and actually get responses!!! All the speakers were great and we sure do appreciate them coming in on a Saturday to talk to and with us. The Texas Medical Center Rocks!!!

    Comment by Lou | May 6, 2007 | Reply

  3. Wish I could have been there! Sounds like it was awesome!

    Comment by Emily | May 7, 2007 | Reply

  4. We had a great time. We just have to hope you can make the next one. Enjoy the photos on my picture section. You can still have fun seeing what was going on.

    Comment by Reggie Bibbs | May 7, 2007 | Reply

  5. We recorded all of the speakers on video. We are now trying to see the best way to upload the information so that people who couldn’t attend can watch the presentations and share in the great information that was delivered. We have almost 5 hours of video!!!

    Comment by Lou | May 7, 2007 | Reply

  6. I would love to watch the video of the presentations!!

    Comment by Emily | May 7, 2007 | Reply

  7. We are working hard of getting ready for posting. stay tuned.

    Comment by Reggie Bibbs | May 7, 2007 | Reply

  8. Reggie so sorry i missed it. I was planning on going but my mom went into the hosptial a week before on a wed. and the saturday before she has radical surgery. they had to remove 90% of her bowel do to a blockage. they don’t konw if it was NF or not. The wed beofre the conference we were told my mom was dieing of liver filure that her body just could not handle the surgery this time. Then on thrusday before they said she was doig betteer. but she is still in the hosptial and they think there might be another blocakage. so we stil may lose my mom. just lost my real dad a year ago. so all this is been real hard. I wanted to be there but my mom needed me more. missed sseeing you again. keep in touch and I hope u do get it on your site so i can see it.


    Comment by mom2nfautism | May 7, 2007 | Reply

  9. Bea,

    I’m sorry to hear about the hart time you are having. Yea I unerstand you couldn’t be there. Make sure you take care of yourself as well. You can enjoy some of the photos we took. We are working on getting it on so that all who couldn’t make it can watch it on there computer. Keep in contact. I’m always happy to hear from you.


    Comment by Reggie Bibbs | May 7, 2007 | Reply

  10. Pobre hombre, ¿Habra algun medicamento para esta terrible enfermedad?

    Comment by Arquitecto Jose Edwin Chavez Lopez | April 12, 2008 | Reply

  11. Ojala esta pagina sirva para encontrar nuevas respuestas positivas

    Comment by Arquitecto Jose Edwin Chavez Lopez | April 12, 2008 | Reply

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