neurofibromatosis cafe

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

Dr. Packer Video from Carolyn Farb Endowed Lecture Series at M.D. Andersen Cancer Center


The Carolyn Farb Endowed Lecture in Neurofibromatosis.

“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″

Speaker: Roger Packer, M.D.

Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC


January 15, 2009 - Posted by | neurofibromatosis |


  1. Sorry for the lousy camera work and audio. I should have used a tripod and plugged into the sound system but I didn’t think I would be able to attend until the last minute so I wasn’t prepared with the right equipment.

    Comment by Lou | January 16, 2009 | Reply

  2. You did a great job Lou. Thank you for putting everything else aside and making time to attend.

    Comment by Reggie Bibbs | January 16, 2009 | Reply

  3. HI there

    Comment by Shelley | January 16, 2009 | Reply

  4. Dear Reggie
    My english is bad. I understand a video if I have a subtittle in english or french. Is it possible for you to write a text about this lecture? Thank very much. Kind regards Francis

    Comment by Boyer_Madrieres.Francis | January 18, 2009 | Reply

  5. Hello Francis,

    I will see if we can get a text about the lecture.

    Comment by Reggie Bibbs | January 18, 2009 | Reply

  6. HI Yall Im here working on my Starbucks was wondering if anybody was bloqqing

    Comment by Shelley | January 19, 2009 | Reply

  7. Francis, this is a pretty intensive lecture with lots of stuff I can barely understand in english. Also it’s 50 minutes long. Unless there is someone out there a lot smarter than me that can distill this lecture down to it’s main points, not sure if we can accommodate you. I will say that it was encouraging to hear about the efforts being made to understand and treat NF.

    Comment by Lou | January 19, 2009 | Reply

  8. Don’t worry Lou and Reggie about the text. I confess you in the french neurofibromatosis magazine I don’t understand. That’s too technical. Happily the text about propolis was very easy to understand. I translated it for my french friend. If I asked a text is because I always hope to read an easy text…

    Comment by Boyer-Madrieres.Francis | January 20, 2009 | Reply

  9. Thanks Francis, Just wish we could find someone to translate it. It would be good to hear it in French way. I would like o hear that.

    Comment by Reggie Bibbs | January 20, 2009 | Reply

  10. Hi Reggie I love your Buddy Holly glasses

    Comment by Shelley | January 20, 2009 | Reply

  11. LOL!! Thank you Shelley. I needed that. I really didn’t of that until you mention it. 🙂

    Comment by Reggie Bibbs | January 20, 2009 | Reply

  12. Reggie and Lou. Thanks so much for coming to Dr. Packer’s lecture, the Carolyn Farb lecture. Lou, thanks for the video and Reggie, thank you for letting me introduce you as THE expert in NF, having lived with if for all your life. I think the audience could then identify with NF as something that can have a profound impact on an individual’s life, not just to hear about the scientific information behind a complex medical condition. Dr. Packer’s talk was very encouraging for progress in the development of effective treatments.

    As a bit of history, Carolyn Farb is a local legend and philantropist who was instrumental in getting our NF program and clinic up and running years ago. She held several fund raisers that brought in hundreds of thousands of dollars. In 1992 an endowed lectureship was established by the Texas NF Foundation in her honor for the purpose of bringing a distinguished scientist to M. D. Anderson to share their knowledge and experience. He was the 11th renowned scientist/doctor to give the lecture.

    The previous Carolyn Farb Lecturers have been:

    1) Robert Martuza, M.D., Georgetown University, Benign and Malignant Schwann Cell and Glial tumors: Clinical Care and Research Directions.
    2) John Mulvihill, M.D., University of Pittsburgh, Neurofibromatosis and Childhood Cancer: Progress through Synergy
    3) Martha Denckla, M.D., Johns Hopkins University, Neurocognitive Manifestations of Neurofibromatosis
    4) Allen Oliff, M.D., Merck Research Labs, Farnesly Transferase Inhibitors as Anti-Oncogene Therapeutics
    5) Bruce Korf, M.D., Ph.D., Harvard Medical School, Molecular Pathogenesis of Neurofibromatosis Type 1: Insights into Diagnosis and Treatment.
    6) David H. Gutmann, M.D., Ph.D., Washington University School of Medicine, Neurofibromatosis 1: Just another Tumor Suppressor Gene???
    7) Tyler Jacks, Ph.D. Massachusetts Institute of Technology, Development of Mouse Models of Neurofibromatosis, and More……
    8) Luis F. Parada, Ph.D. Center for Developmental Biology, UT Southwestern Medical School. What Mouse Models of NF1 Teach us About the Brain.
    9) David H. Viskochil, MD, PhD University of Utah. Neurofibromatosis, Type 1: Variable Expressivity, Atypical Presentations, and Malignant Peripheral Nerve Sheath Tumors.
    10) Nancy Ratner, Ph.D. Cincinnati Children’s Medical Center. Peripheral Nerve Tumorigenesis: When a Ras-GAP is Mutant.
    11) Roger Packer, M.D. Children’s National Medical Center; The George Washington University. Molecularly-driven Clinical Trials for Children and Young Adults with NF1

    If you google any of these names you are sure to learn a lot about NF.

    Comment by Bart | January 21, 2009 | Reply

  13. Hi there whats going on I have working on my coffee

    Comment by Shelley | January 21, 2009 | Reply

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