neurofibromatosis cafe

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

“I love life and each day is a gift.” – Matthew

Reggie Bibbs at first Astros game EVER! Hello Reggie- My friend, Melanie told me about you and me must say I am very impressed with your resiliency and the battle we all have with NF. My name is Matthew 41 years young, live in New York. My mom, my 2 sisters and myself have NF 1.

I have had so many surgeries I lost count. 2 of them were extensive spinal surgeries. After my last spinal surgery, I needed just as before the surgery to use a cane and wear an AFO on my right leg and knee cage on the left. But know I must wear a KAFO on each leg and use a walker due to osteoporosis and degenerative disc disease. There are still innumerable tumors that of course cannot be removed.

I love life and each day is a gift. I am a member of the NF Marathon Team and have walked in several marathons to raise awareness and funds for NF. Yet lately I feel drained and been trying to reboot myself. I thank god I can still walk, but cannot remember what is like to just simply walk. I hope we can communicate, you sound like you have sense of humor and you are an inspiration to many.


Hi Matthew,
I will have to make sure I reply to her email after I finish your email. I will reply to every email I receive. I feel so lucky to someone will take the time to write me. You have blessed me your email. I’m always happy to reply to all the emails I receive. Keep them coming. Please remember to go to my blog and leave comments.

In my family, my mom has nf1 and I have two sisters with nf1. All are older them my. There were two of the males in our family with nf. My brother and I . Ronnie did not have any real problem with his nf until later in life. He developed a tumor that ended up becoming cancer. We lost him is September of last year. We are still trying to cope with the lost. I know his suffering is over. He is in a better place. Ronnie is one of the reasons I am working so hard to bring awareness of all types of nf. I don’t want anyone to hurt like we did, and others who lost family and friends because of nf. We can do it together. Your support is what give me that drive. Your emails and kind words are a great source of energy. Thank you. I look forward to hearing from you anytime. I will reply. I promise. Reggie


May 2, 2007 - Posted by | Friends, neurofibromatosis, NF1


  1. Reggie, You are playing such an important role in the lives of NF patients. You can be the advocate for those who don’t have the resources to get the support they need. Bravo, Reggie!!! Bravo!!! You truly are an inspiration to others. Definitely to me!

    Comment by Lou | May 2, 2007 | Reply

  2. Thank you. I AM more then happy to be the one to help.

    Comment by Reggie Bibbs | May 2, 2007 | Reply

  3. I agree – you are an inspiration to many, including myself! I wish you nothing but the best in your fight with NF and I hope that my son can grow up to be as confident and strong willed as you are! I will definitely be exposing him to this site so he can see that nothing can hold him back in life, not even his NF.

    Comment by Emily | May 2, 2007 | Reply

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