gb.jpeghr.jpegThis is interesting to me. I saw a PSA for neurofibromatosis, with Harold Ramis. Harold Ramis is a comedian who was in Ghostbusters. I would like to know, doese he have nf ? does a family member have nf ? Or did he feel the need to help with making people aware of neurofibromatosis. It’s great that someone as famous as he, has join in that battle against nf. If you have not seen the psa, click HERE.

Most of you may have heard me speak of my older brother Ronald. We call him Ronnie. Ronnie is the third son of mom and dad. I have other sisters and brothers, you will hear about them at some point. I want to tell you a little about Ronnie. Ronnie is another reason I started this site. My brother and I are the only males in the family with nf. Well its only one male now. My brother Ronnie went home to be with the Lord in September of last year. We miss him so very much. I have three brothers that do not have nf. Two sisters that have nf.

Ronnie is one other reason I wanted this site to happen. I want to creat awearness of the type of cancer that took my brother’s life. We know it was nf releated. My post today is to ask you to keep watching for my tribute to my brother RONALD BIBBS. You will see for yourself what a kind man he was. I’ am happy to call him my brother. I take joy in that. Let me know you thoughts, and what you would like to see. Ronnie’s tribute comming soon.

I wanted to post this message because of something that came to mind as I was reading one of the boards about how we found out about neurofibromatosis. It was 42 years ago. Not as much was known about nf as we know now. We where told about the shorter life expectancy of people with nf and that they do not live beyond a certain age; we know now that is not the case. That was how little was know about nf at the time. This is one of the reasons we must get as much information out about nf as we can. I would like to hear from you. How old where you, and what where you told, when you or a family member was diagnosed with neurofibromatosis?

Houstonians and anyone who has visit our city. I’am looking for great places for photographing. If you know of areas around Houston, post them.  I know we have many areas that would be terrific to photograph.  I have in mind are places for a  picnic, parks and areas that look nice in the spring. Please post.

beltbuckle1a.jpgbuckle2b.jpgWell we all know the Houston Live Stock Show and Rodeo has come to an end. But, as you know I am a fan of country music, and I still have my bling belt buckle. Yes I will still wear it with my JUST ASK -shirt. I have a picture of my belt buckle. Let’s have a guessing game just for fun. I would like to know how many will get this one right. Which belt buckle do you think I have? The beltbucket on the left or the right?

goodwill.gifLast night was the 19th Annual Goodwill Gala. Mom and I was invited. Goodwill and I go back a long way. It was there I had my first job. NF has changed all of that. Many of the things I was able to do before, I can’t do anymore.

I learned a lot and saw a lot of old friends. I met a lot of new ones too! I hope Goodwill will continue the terrificreggiedorothygoodwill.jpg work they are doing for all of the great people that have jobs because of Goodwill. Maybe some here have worked for goodwill, and would like to share how thay have been helped like so many others employed By Goodwill.

Making Cancer History Bicycle Team Rides Again

Members of Team Cheniere hit the road again to raise money for neurofibromatosis research at M. D. Anderson. The 2006 Race Across America, an annual cycling competition involving about 40 different teams, left San Diego, Calif, on June 13, 2006 and rode over 3,000 miles nonstop, day and night and arrived in Atlantic City, NJ.

Poto of Kirk Gentle and Chris Shaw

This year’s “Making Cancer History Team” consists of only two riders, Chris Shaw and Kirk Gentle (left). A support team included Leslie Christison, RN, head nurse of the Robin Bush child and adolescent Clinic, and M. D. Anderson photographer Shawn Green. In 2005, Team Cheniere raised over $100,000 to fund neurofibromatosis research programs at M. D Anderson. They hope to raise even more this year to benefit the Children’s Cancer Hospital.

One of our patients, Emily Parker, has been adopted as their “pedal partner,” a living inspiration for riders to keep going. Read Emily’s story at teammakingcancerhistory.org.

Read Team Cheniere’s “road journal” or make a donation on their website.

This Year the event will be this April. Date to be announced.

I have been getting lots of wonderful encouraging messages from all you. Thank you. I went for my regular check up at MD ANDERSON in Houston Texas. You never know what will happen with this disorder. Everything seem to be ok, but there are things that I will have check out to make sure. A MRI was ordered and that will be soon. We want to make sure the problem with my back is not something releated to nf. No need to worry now. I’m sure it will be ok. Just thought someone would like to know. Lets keep the blogs alive. Keep checking. New things added often. Give me your ideas of what you want to see. I have a few surprises up my sleeve. You will have to tune in to find out. Thanks

oreos.jpegWell, I said I would post how the fired oreo’s. It was my first time to fry oreo cookies. It taste like chicken. <g>

I was surprised. It didn’t look very pretty, but is sure did taste good. It was like fresh baked cookies out of the oven. If you like sweets as much as I do, you will enjoy fired oreo. I used the double stuff. A plate of the oreos mile and the remote control, then you go your self a content dude. Now that you know how I feel about it. Let me hear from you. I wonder how a deep fried sneakers bar would taste ?

Yes, I did enjoy the show last night. Corteo, By Cirque Du Soleil. It was a wonderful show. If you a familiar with Cirque Du Soleil you will enjoy the show. Lots of funny parts and the music good. After you see the show I would be happy to hear what you think. Last night was was like a dress rehearsal. Tonight will be the first nigh. Hope to hear from all of you that will see the show.