I’m so happy that I am meeting new friends, to share our stories with one another. I asked Katie’s mom Vanessa about the UK. She writes a lot of things I enjoyed reading. I wanted to share them with you. Read below. I’m looking forward to the video, which I hope to post here. Thank you Katie and Vanessa! Continue reading
Today I went to the Harris County Court House and filed JUST ASK! as a DBA in the STATE OF TEXAS. I am so happy! This is terrific news because it makes me feel that what I’m doing is very real: To the State of Texas and to the people who are affected by neurofibromatosis.
Not only did I file a DBA but I also opened a business checking account at Compass Bank under the name “Just Ask!” The checks will have my logo on them (drawing of my face) and “Just Ask!” Continue reading
This is an email I received from my new friend in the UK! – Reggie
Im loving your web site, i have only just stummbled across it and as its
very late here in the UK im off to bed in a mo. i shall have a good old nose through in the morning. I just wanted to share my daughters site with you. Like you she has been a real star and battle through the toughest of times. Keep up the good work reggie feel free to contact us if you wish. All the best to you. take care, Vanessa Continue reading
Byron, Lou and I went to IKEA today to do a little shopping for my bedroom. I had just finished painting my bedroom and Lou suggested it might be a good time to do a little “spring cleaning” and take a new look at my bedroom. So we went to IKEA for ideas and saw this great bed for like $200! So I bought it! Continue reading
Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.
Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.
People are beginning to JUST ASK! This is GREAT! Friday night my family and I went to one of our favorite restaurants. Taste Of Texas.
We had the best time I can remember. It was 15 of us. Sisters, nieces, nephews, brother sister in-law,and Mom. Of course ME ME ME! We all sported out JUST ASK t-shirts. We felt like stars. We got a lot of smiles and people commenting on our t-shirts. Lots of you ASKED. I thank all of you that wanted to know. It was a wonderful family night for us. Thanks to the Staff of The Taste Of Texas. You did a TREMENDOUS job as always!
NZ bee compound gives tumours the buzz-off
A bee product from New Zealand has been shown to suppress tumours in mice, says a study presented to a scientific conference in the United States.
The researchers at a German hospital tested propolis against tumours that can occur in the nervous system and on skin in a condition called neurofibromatosis. Continue reading
Last night I was invited to speak with Net 2 about my website, and neurofibromatosis. Wow! What a tremendous experience it was FOR ME. A great group that was very interested in neurofibromatosis and my campaign. I was able to share what it’s like to live with nf , and how I deal with it. I learned a lot from the group as well as I hope they learned more about nf. I feel blessed that the group received my message. Meeting Net 2 was just what I needed. Maybe if I hang around the group, I can learn more tips about making the perfect site for neurofibromatosis.
Lou was playing with the video part of his digital camera and accidentally made a video. He’s pretty excited about it so don’t anybody tell him it’s prettylame. We don’t want to hurt his feelings or anything!!!
By the way, those burgers were the best as was the company and the hosts! I am so blessed to be have such great friends and support!
“OCULAR FEATURES OF NF I & II”
DR. RICHARD ALAN LEWIS
Profesor, Departments of Opthalmology, Pediatrics, Medicine and Molecular & Human Genetics, Baylor College of Medicine
Dr. Lewis formerly worked with Dr. Vincent Riccardi during the early days of neurofibromatosis discovery, identification and research.
I thought it would be nice to show some of the addy awards we won in neurofibromatosis. The awards are for the PSA and the work that is going on with the website. It is because off all the support you are giving. keep visiting my site and the blog. I thank you for your support
This show that we are starting to get notice. This is what we want. Its only the beginning. It a start of something big. I’m sure there will be more to come. You can rest a sure I will post the others when we receive more.
Most of you who know me, know I love baking and preparing large meals for my family relatives and friends. Sunday’s are always fun. That is the day the largest meal is prepared. Yesterday was a nice meal, and I would like to share some photos with you. Now this wasn’t the best meal, but we all enjoyed it and are very thankful that God provides for all of us It you have some photos of what you enjoy cooking, grilling, or baking share your your photos and comments. And if you have tips that would be terrific. I know I can use all the tips I can get. Looking forward to your comments. My favorite cake to bake is German Chocolate Cake. And Cobbler. Peach and Berry cobbler. You will get to see photos of that soon. I would love to love to see your photots.
For all of you who missed the NF SYMPOSIUM presented by the Texas NF Foundation, the first presentation is now available by clicking HERE.
Dr. Sharon Plon, Clinic Chief, NF Clinic, TX Children’s Hospital and Associate Professor of Pediatrics and Molecular and Human Genetics,
Baylor College of Medicine presented “Update on Genetic Testing in NF1 and NF2.” We will be posting the other 4 presentations just as soon as we can convert them to the proper format for easy streaming.
Thank you Texas NF Foundation for allowing me to record video and take lots of photos to share on my website. Also, thank you Josh Powers of STANANDLOU Advertising for editing the videos and converting them for digital! It was a Saturday full of great fun, great friends and great information!!! Plus, I made a lot of new friends!!! If you have never gone to one before, I definitely recommend you attend the next one.
- 2008 Houston Highlights
- A MESSAGE FROM REGGIE
- abc news
- About Me
- ADDY Awards
- Astros Game
- Denise Terrill Golf Classic
- Emily's Name-My-Baby Contest!
- Favorite Places
- Friends of NF
- Friends with NF
- Greg Gorman
- Houston Art Car Parade
- houston astros
- houston livestock show and rodeo
- Houston Roller Derby
- Houston Texans
- International Festival
- Laurie Selzer-MNI
- M.D. Anderson
- Martina McBride
- McKee Street Bridge
- Medical Resources
- national doodle day
- NF Bulletin Board
- NF in the News
- nf inc
- Porch Swing Pub
- Some People
- Texas NF Foundation
- TEXAS RENAISSANCE FESTIVAL
- Valentine's Day
- Web Technology