Posted on

Neurofibromatosis

Today I had a Terrific Day! I went to Discount Tire. There was a nail in my tire, and I needed to buy a new one or have the old one patched. This is something I must work on: not to expect everyone to have a negative reaction to me. Usually I don’t feel that way. There are times I do not. When someone treats me nicely, it gives me a wonderful feeling. It makes me want to write a letter to the company and tell them about myself, and what great employees are working for the company. I must remember they are doing their job. They are treating me the way I want to be treated (a good customer). Please leave me your thought on this.

Posted on

Addy Award Nomination

Guess what!

Lou Congelio just called me. He is president of STANANDLOU Advertising, the agency thatreggiebibbswhoami2.jpg helped me develop this Web site. This site has been nominated for an Addy award and the awards ceremony is on February 17. Lou and I are invited to a dinner and an awards presentation.

I am really excited about the nomination. Winning would be a great honor, not just for me, but for everyone else who has NF. People with NF and other disfiguring conditions find it difficult to do everyday tasks, and this site increases public understanding of the hurdles that we have to overcome.

Thumbs up If we win, I will accept the award on behalf of Ronnie, my brother who had NF and cancer. He died in September of 2006, and I miss him a lot. One of the benefits of this site is to tell everyone that people with NF may be susceptible to developing cancer. NF itself is not life-threatening, but if you have it, you need to be in the care of a physician and alert him or her if anything changes about your condition.

Do you have NF? Do you know of someone who does? If yes, tell me your story. I will be thinking about you at the awards ceremony.

Posted on

Just Ask!

Wherever I go, I wear a shirt that says, “Just Ask.” Even though I am wearing the shirt, people still hesitate to talk to me—they do not want to be insensitive.

From the time we are kids, we are told not to ask questions. Children stare at me and say “What happened?” and their mothers hush them. They will grow into adults like many I know who are afraid to talk about my condition—afraid they might hurt my feelings. I don’t mind questions. I am an outgoing guy and I really want you to know about me.

Do you want me to know about you? Write to me. I’d love to hear from you.

Posted on

Some People

Yesterday, I took my nephew to the bus stop. We stopped at a traffic light. You know that feeling you get when someone is looking at you? I felt that. When I look to my left, I saw a car with four people looking at me laughing.

I was bewildered. Why is someone’s outward appearance funny? I can understand a person being afraid to look at me, but to think I am funny? I do not understand.

Has this ever happened to you? If it has, I am really sorry. Please write and tell me about it. Believe me; I will sympathize with how you feel.

This Web site will be good because we can encourage people not to look at our outward appearances, but at our hearts.