neurofibromatosis cafe

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

Carolyn Farb Endowed Lecture in Neurofibromatosis


Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

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

Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.

You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks


December 15, 2008 - Posted by | Awareness, M.D. Anderson, Medical, Medical Resources, News, NF1, Research


  1. Today was a great day! I just can’t say enough about Dr. Bart Moore of M.D. Andersen. He has stood by and supported Reggie from Day One and he was there today for Reggie introducing him from the podium as “a lifelong expert on neurofibromatosis.” It was great seeing Dr. John Slopis again! Hadn’t seen him since the NF Foundation’s 25th Anniversary in Dallas! Our old friend, Carolyn Farb, was there to kick-off another Carolyn Farn Endowed lecture. Reggie and Carolyn practically put NF on the map back in 1990 with the fundraiser, “My Heart Belongs to Daddy” raising a ton of money on the ice-skating rink at the Galleria!

    Comment by Lou | December 15, 2008 | Reply

  2. I look forward to what the New Year will bring for neurofibromatosis. I beleive great things will happen for everyone that is affected by NF.

    Comment by Reggie Bibbs | December 16, 2008 | Reply

  3. It’s good to know smart people are pooling their talents and resources to find an effective treatment and a cure.

    Comment by Lou | December 16, 2008 | Reply

  4. Hi Everybody I had 2 cups of coffee and Im going to Walmart

    Comment by Shelley | December 17, 2008 | Reply

  5. Hi Shelley,

    Is it cold where you are? Have fun at Walmart.

    Comment by Reggie Bibbs | December 17, 2008 | Reply

  6. Hi Reggie its cold here I had fun at Walmart Got you 100 dz cookies for Christmas lol

    Comment by Shelley | December 17, 2008 | Reply

  7. Cool! I LOVE COOKIES!

    Comment by Reggie Bibbs | December 17, 2008 | Reply

  8. No dog cookies for Shinner?…

    Comment by JohnP | December 17, 2008 | Reply

  9. Shinner is in big trouble. He stole one of my chocolate chip cookies I had on my desk. I left out of my room for a second and came back it was gone.

    Comment by Reggie Bibbs | December 17, 2008 | Reply

  10. Whats Everybody doing next week

    Comment by Shelley | December 17, 2008 | Reply

  11. Hello from Latvia!

    My son has spontaneous (me and mother are without the mutation) NF1. I check for treatment/disease control news from time to time, and it’s great to hear that ice is melting. In theory, of course, it sounds easy… If body because of mutation in NF1 gene isn’t producing correct neirofobromin, then it should be added artificially. Maybe produced with help of GM bacteria. But scientists laugh at me now, I guess, because theory isn’t easy to make real. Anyway, good luck to all you folks in US, both who have NF1 or NF2 and those who try to solve this unpleasant problem. Merry Christmas!

    Comment by Pēteris Pūrītis | December 18, 2008 | Reply

  12. Thank you Pēteris Pūrītis for adding to the blog. I hope you will visit often. I send my best to you and your Son. Merry Christmas to you and your family.

    Comment by Reggie Bibbs | December 18, 2008 | Reply

  13. My dog did that too me also, when I asked him about it, he acted like “what are you taking about, what cookie ?”

    Comment by JohnP | December 18, 2008 | Reply

  14. My dog just looked down and turned his hear in quilt. He wrinkeled his eye browes at the same time. It was funny. I didn’t get mad at him.

    Comment by Reggie Bibbs | December 18, 2008 | Reply

  15. Dear Reggie and Lou,

    It was really nice to see you at the Farb Lecture and thank you for the pictures and video. Dr. Packer is an international expert in NF and his lecture showed that many people are working to find treatments and, hopefully, cures for the many complications suffered by those with the disorder. It showed that there IS hope and people are working on it, even if it sometimes seems hopeless. I will be very interested to hear people’s thoughts and comments after Lou posts the video.

    Comment by Bart | December 19, 2008 | Reply

  16. Thank you Bart for asking me to attend. I was more then happy to be there. I’m happy that Lou was able to attend as well.

    Comment by Reggie Bibbs | December 19, 2008 | Reply

  17. Hey Bart, thank you for your kind words. I’m going to edit the video over the holidays when I have a little more time on my hands. The picture quality looks good, I just hope the audio is ok as I wasn’t plugged into the sound system. In any event, thank YOU Bart for your continued friendship and support. Knowing that you’re there means a lot! Have a wonderful Holiday!

    Comment by Lou | December 23, 2008 | Reply

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: