Thank you for the e-mail MIke forward it to me. How did yo hear about my story? I fist saw you on the O about a year ago when I was flipping thou the TV chs Mike has been trying to help me get my story out. I ws chatting with friend today on yahoo that lives in Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.
I would like your imput on anything that would help make the website better. I wike your store very much it would great to speak to you
Youngstown Ohio Read more »
The Carolyn Farb Endowed Lecture in Neurofibromatosis,
“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″
Speaker: Roger Packer, M.D.
Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC
Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.
You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks
The Texas Renaissance Festival this weekend sounds like a terrific idea. I plan to be there Saturday to join in the fun. This will make my second year to attend. Last year was a blast and I’m sure this weekend will be just as fun as last year. See the link for more on the Festival. If you enjoy things like games food music then you will enjoy the Renaissance Festival. I will be there hope to see you. See the link for more information.
I’m looking forward to another great time in Burton Texas. Camp For All. The first day of camp is September 5-7th. Everyone who is going should have all there information submitted by now. I hope so.
Again this year The Texas Neurofibromatomatosis Foundation is having their annunial NF Family camp. Again we are going to have a terrific time meeting our friends from last year, and I know we will make new friends this year as well. Horse back riding swimming games and more. The best part is meeting new friends and sharing stories. It’s going to be a great one and I hope to see you there. Who knows you may see someone playing his music with his newly formed band. I’m not saying you will have to come and see. Some you know might play the autoharp. Just maybe.
How can I begin to tell you how much fun I had yesterday at the International Festival. The day stated out very well with meeting people who have seen me before. There where happy to take photos with me. I was remembered from last year. The food was terrific music was great. All types of music. I enjoyed the country music of course.
The best part of the evening was music from the Neville Brothers. Arron Neville. I actually got to meet the Neville brothers. A very big thank you to the Neville brothers for taking time to meet and take photos with me. Also thanks to my friends who joined us, Matt Jones, “The Tall One” and William Hughes, “The Smart One.” I said man I would love to meet the Neville brothers. Matt said, “I bet I could make that happen.” Well, he did and you see the photos as proof. I have to tell all of you I had the best time ever.
It would be a really good thing if we could get a group together and do what I have been doing for a year. I can promise you it will change how people feel about NF, and you will feel better that you did it. Whether you have nf1 or nf2, it is a great thing to let people get to know who we are. I would really like my friend, Brian, to go with me some time. I really think people are more understanding now. It seems to me that people expect me to be there. How cool is that?!! Next stop, the “Art Car Parade!”
Tonight was another great night at the Houston Livestock Show and Rodeo!
I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.
I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.
I know why she loves Houston. I feel it every time I go out. So many people here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!
I spoke with Mari Garcia administrator of Gillian Anderson’s Official Web Site, I was asked sometime ago to help out and to contribute a doodle for NF, Inc’s Second National Doodle Day Auction. I was happy to post a blog and do what I can to be of help. Please check out the links and see your favorite Actors and actress and others who have support the fight against NF.
The auction will start on May 8 on eBay. So far there are two pages and more doodles will be added as they come in. Be sure and blog your favorite doodle.
NF, Inc. is raising money for neurofibromatosis through their annual National Doodle Day! As part of NF Awareness month, celebrity doodles will be available for auction on eBay.
Neurofibromatosis is a genetic disorder that affects one in every 2,500 births. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined. Funds raised from the Doodle Day auction will go to support education, advocacy, coalitions, and research for treatments and a cure.
Cowboy Up, America! When a cowboy’s in a pinch, he just tightens up the cinch, spurs his horse and rides right through it, cause that’s the way the Duke would do it. He’d Cowboy Up.
This year it’s going to be another terrific year for the Houston Livestock Show and Rodeo. Just as I did last year, I will be there enjoying all activities for the 2008 show.
This year I plan to see more of the livestock show then I did last year. As for music, there are several performers I want to see this year. There are two I have in mind now, that I want to see Rascal Flatts and Tim McGraw I will see more then one, I hope. All that to look forward too, and I haven’t even started on the great food.
How many of you are planning to go the the Rodeo, and who will you see? It would be a great idea if any of you go, to take pictures and send me a photo and I will make a section for our photos for this year on the blog and Flickr.
Remember let’s keep this blog on movies. Maybe we can get some ideas of the best movies in our own option. a friend of mine told me I should see the movie 300. I’m not sure if this is a new movie. Have any of you seen the movie. I enjoy going to the movies. Just want to know what are the best ones to see. One of the radio stations ask that question and I think its a good one.
The movie you watched when you were younger, would you say you still like it as much?
I wanted to let you know we are home from a TERRIFIC weekend at a
wonderful place called CAMP FOR ALL, In Burton Texas. It is an amazing place for persons with disabilities. I would give this place a five star rating. A big thank you to the kind staff. It was my first time and will NOT be my last time. Looking forward to next year. I also want to thank the Texas Neurofibromatosis Foundation for Helping my family to be a part in the Fun. Let spread the word and try to have more campers next year. I hope you will join us next year. You will love it. PHOTOS
I hope you are enjoying the blogs and the fun we are having here, as we learn about Neurofibromatosis. We are here for everyone who has NF or has a family member with the disorder. I support you as well as my friends on my blog. Let’s continue to share our stories and information with each other about NF. With all that being said, I would like to share a photo with you. My friend ADGIANT or better known as Mr. Smart Mouth. This was a dream come true shoot. The only bad thing about this, is the photographer didn’t let me finish.
I received this wonderful message from Tammy. Tammy was nice enough to let me share this message. I am always encouraged when I get messages like I have been getting from you all. It’s good therapy for all us to meet here and support each other in time of need. Oh and not to forget all the fun we lave here, as we learn about NF together. Lets start supporting Tammy and Austin. That’s what we do here right. Maybe we can talk Tammy into send a picture to add with her blog. What do you say Tammy? Hope you see you here soon. Read more »
I received a wonderful letter from my friend from years back. At the time I met Mike Moncrief, he was Senator Mike Moncrief for the State of Texas. And now he is Mayor Mike Moncrief of Fort Worth. He and his wife Rosie have been very supportive in everything I have been involved in. You will see that in the photos in my picture section on Flickr. Mike and Rosie also wear one of my JUST ASK t-shirts. I’m honored to call them my friends!
Here is the email that he sent me today:
“Hey Reggie, I just visited your website and i was most impressed. The ongoing
challenge of raising awareness of NF and search for a cure is made easier by your efforts. By the way, I wear my Tshirt every chance I get and have had numerous folk come up to me and ask about it. Keep up the great work and you are more than welcome to post this email on your blog.
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! Read more »
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!” Read more »
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. Read more »
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.
- 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