neurofibromatosis cafe

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

MY MESSAGE

Most of you may know a little about me. My Name is Reggie Bibbs. I have a disorder

called Neurofibromatosis, or NF for short. This disorder causes disfigurement, pain,

blindness, hearing loss, learning disabilities, and yes, even death.

Not only that but most of us who suffer with this disorder have everyday trials that may seem easy for you, but is very hard for us. For instance, how many of you give it a second thought about going out to buy supplies for your computer? You may worry about what you will wear? But that’s probably it.

Or maybe you worry that your hair is thinning on the top? Or worry that you have a little gray? If you do, I’m here to tell you that I would love to have not just one of those problems. I wouldn’t mind having all of them.

If only someone would take just one of mine.

How many of you would trade with me?

Have you ever been locked out of an electronics store because people were afraid of you? Have you ever been made fun of by a worker at a public park who tells the friend you are with, that he cannot take the animals out of the park as she points at you. And the apology you get is, “I thought you had a mask on.”

These are just a few of the reasons that make it so important for me to raise awareness of neurofibromatosis.

It is my dream to help people understand more about what NF is, and learn about who I am.

When I get an email from moms and dads that have children with NF, it makes me happy that I can help them share their stories and also help them get the information they need.

The stories are heart-warming especially when they touch the lives of children, Moms say thank you for being our voice.

But I can’t do it alone. Thanks to a great network of friends and supporters, I have been given the opportunity to make a difference. But there is so much more to be done. And now, I ask all of you who are reading this message to look deep within your heart and help me take this mission to the next level.

Please help me speak for those who don’t have the means.

Your purchase of a “Just Ask!” t-shirt or two would make an immediate impact not just financially but publicly. Direct donations would allow me to optimize my website and also purchase the basic equipment I need to work faster, better and smarter.

I’m willing to do the heavy lifting because I have strong shoulders. I just need a little help with buying the right tools.

I thank you for your friendship and support.

Make it a Tremendous day!

Reggie

June 10, 2007 - Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Friend, Friends, neurofibromatosis, News, nf, NF1, Some People, Texas NF Foundation

13 Comments »

  1. Reggie, what a beautiful message.

    Comment by adgiant | June 11, 2007 | Reply

  2. Fron the heart. Thank you.

    Comment by Reggie Bibbs | June 11, 2007 | Reply

  3. And what a huge heart you have, Reggie. I’ll wear my “Just Ask” shirt with pride.

    Comment by Rie | June 11, 2007 | Reply

  4. Thank you Rie.

    Comment by Reggie Bibbs | June 11, 2007 | Reply

  5. Great message! Thank You for being an encouragement and a blessing!

    Comment by AmyG | June 11, 2007 | Reply

  6. Smile. Thank you.

    Comment by Reggie Bibbs | June 11, 2007 | Reply

  7. Great message Reggie, I’ve got my shirt. I hope we can put some more on some backs at Netsquared

    Comment by jaymac4 | June 12, 2007 | Reply

  8. Hey Reggie, I bet you did not know that I used to travel with George Clinton, did you? For a while we were an item. He use to send me plane tickets and I would catch up with him at the airport so we could travel together. He was so much fun. This was in the late 70’s.

    Also, I had the honor of working with the Gatlin Brothers, I have a picture of Rudy Gatlin and me when I worked for the Education Foundation. They did a benefit concert for us. He is a nice guy. He was married, but I have learned that he and his wife have parted ways.

    You are doing a wonderful job with this website. I am very proud of you. It really looks good. Keep up the good work.

    I will order a tee-shirt as soon as I can.
    Love
    Dotty

    Comment by Dotty | June 20, 2007 | Reply

  9. Hi Dotty,

    Thank you for your visit to my site. Please stay tune.

    I thought about that when I had my picture taken. Lisa told me you use to work with him. Now you tell me you use to work with the Gatlin Brothers. WOW! I love all of thear music. They have one call THE HEART.

    I really feel good about the site and the nice emails I have been getting for Dads and Moms with children with NF. They are very supportave. I have to keep working. I can’t let them down.

    Thank you Dotty

    Love Reggie and I wil say hello to Mom for you

    Comment by Reggie Bibbs | June 20, 2007 | Reply

  10. Hi Reggie-

    You have a very nice website. I am very impressed with all that you do for getting the word out. You and your story really touched me.

    I am 47 years old, I have NF and so does my 13 year old daughter.

    Take Care

    Comment by Jenny | June 24, 2007 | Reply

  11. Thank you Jenny. I’m very happy you are enjoying the sight. You too have a story that can help all of us that have nf. All of us can make a difference. You can share your story as well. It is just a special as mine. May God bless you and your daughter.

    Reggie

    Comment by Reggie Bibbs | June 24, 2007 | Reply

  12. truely a wonderful website.. many like us are affected with this disorder but ack the gut to speak up openly with pride and amke people more knowledable… a gr8 website.

    Comment by zahra | April 16, 2008 | Reply

  13. Thank you Zahra, welcome to the blog. I know you will enjoy being here. I will post your message on our new blog post. Come and see it later.

    Comment by Reggie Bibbs | April 16, 2008 | Reply


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