Neurofibromatosis Cafe A place to talk, have fun and share.

It is that time of year again. The Texas NF Foundation, is making it possible for nearly 200 persons to have a great weekend at Camp For All. This weekend will be our yearly camp for persons with nf, along with family and friends. The one time most of us get to see each other. I’m looking forward to horse back riding, Zip line, which I hear is lots of fun. Fishing, petting zoo, and Lots of talking with new and old friends. Also looking forward to sharing with you photos to all who can’t make it to camp this year. Let’s talk about camp this week. What do you look forward to this weekend at Camp For All.

This is a blog that all School Students will want to comment on, as well as parents. It is that lovely time of year again. YES! School is out for the summer. woo hoo.  Lets talk about some of the fun things we can suggest for those who don’t have a clue of what to do for the little ones who have all this time to spend at home. And for those of us who have nieces and nephews that want something fun to do, post it here.  Something that will keep them busy and the uncle happy because they are happy having so much fun.  See then everyone is happy all summer long.

My friend Francis was nice enough to send me a t-shirt all the way from France. I’m  proudly wearing the NF FRANCE t-shirt. Francis also is a bloger here and he has is own blog page as well. He wrote about me in two of his blogs. We recently spoke on the phone and he, like all of us here, is spreading the word about nf and hope there will be a cure some day. There is always hope. The link to the site on the shirt is anrfrance.org If you would you can visit Francis blog. droitaladifference.blogspot.com/

You can use google translate if you don’t know French. It works really well. Some day I will visit France wearing my nf France t-shirt.

See all the photos HERE!

We are in the last month of 2008. I’m excited for what we are planning for 2009 and the JUST ASK! campaign. We have just designed a new ad campaign with new photos and messages. The photo shoot was donated by professional photographer and friend, Greg Gorman of Los Angles California.

The new ads will be sent as a public service announcement to a variety of publications throughout the country. Also, we have entered them in the American Advertising Federation award show. The ads will compete with ads from all over the country. This is a great thing to happen, whether we win or not, because our message will be seen from people all over the world. Which means, more people will know about NF. The ads are strong and to the point.

In 2009 I look forward to a bright New Year. We will have a new look. We started with the new t-shirt design. The website will be bright as well. I hope that you will join me in making 2009 brighter. We have the same cause. Awareness of Neurofibromatosis.

CLICK TO VIEW ENTIRE CAMPAIGN

This weekend I got the shock and surprise of my life! I was going through my emails looking for a phone number when I came across an unopened email dated November 14! It was from my new friend Kevin Nealon, from Saturday Night Live, who I had just met the night before.

I have no idea how I missed this very important email but I guess it was because I was traveling and wasn’t able to check email till I got back home. Anyway, here is the very nice email that Kevin wrote plus the photos he sent.

Hey Reggie,
So great meeting you last night, and your friends! I’m so
flattered that you guys came to my show. Oh, loved your website, too!!
Susan and I loved checking out each category. Great videos and pics,
great coverage on the news stations as well. We’re so impressed with
your courage and your raising awareness of NF. What a difference you
are making! Please keep us updated on the foundation.

Attached are a few pictures of me wearing your shirt. Btw, it
fits me like a glove. I have a new cause now.

Best wishes,
Kevin and Susan

Most of you have seen the photos from my trip to Manhattan Beach California, when I went to visit my friend, Scott. Well, on the visit, Scott suggested we go see Kevin Nealon at the Comedy club. That is where it all happened. After the show Kevin came over to meet me. It was there when I shared with Kevin and his Wife Susan about NF. What a nice couple they both are. So kind and understanding to NF, and the JUST ASK campaign. I’m proud that Kevin is wearing one of my JUST ASK! T-shirts. You never know where you may see one next. Thank you Kevin and Susan for your support. Hope to see you soon.

Thank you Scott for allowing me to be your guest at your home. Lisa, Maeve, and of Course my friend Clive. There is no way I can explain how happy I feel about the way things went for me.

It’s good to be home, but sad to leave the company of my great new friends. Thank you all for your kindness.

Another amazing day out at Minute Maid Park! Lou and I went to the Astros game today. We had a great time. The game was great and the Astros won! It was really nice to see so many nice people. Like Brandon, who saw me on TV and came up to introduce himself. Thank you for doing that!

I saw Cathy Clark, who was my bus driver when I was in school. Lets just say it was over 25 years ago when I used to ride the bus to school.

Cathy remembered me by name. I was so happy when she told me she use to drive me to school. Cathy works at the concession stand in Section 409 of Minute Maid and, I got to tell you, I’ve never been treated with more love and respect than from that entire food area!

I think Cathy is a supervisor or some other type of important person because she was definitely in charge! What a great representative for the Houston Astros staff. Cathy, you made me feel so special and it means the world to me! Hope both you and Brandon will be a regular on my blog. Thank you both for making my day!

After the game, Lou and I went to the fabulous McKee Street Bridge and took some photos. WOW!!! What a beautiful bridge and park! Lou’s friend, Kirk Farris, had single-handedly transformed this bridge and bayou area into a place that is totally cool, beautiful and peaceful! It’s just a few blocks north of Minute Maid Park on McKee Street just south of I-10.

Of course, taking all those photos at Minute Maid and McKee Street made us pretty hungry and thirsty so we went to the new Porch Swing Pub at Washington and Waugh in The Heights for crawfish!!! Man, oh, man, were they good! Lou had beer. I had Coke.

It was a beautiful day!

Wow! Tonight I was invited to the Rodeo once again. It was a more then Terrific night. The music was the best I’ve heard so far. Clay Walker sang all of my favorite songs and encouraged everyone to join in. Pretty cool. It was cool to see him ride a horse to the stage. A real Texan.

A big thank you to Laurie Selzer, from MNI (Media Networks Inc) for allowing me to join them in the Verizon West VIP suite. The food was terrific. I wish I knew everyones name I would love to say thank you for the wonderful treatment.

Here are a bunch of photos I took tonight. I hope to add everyone’s names to these when Lou gets them from Laurie!

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.

Click here to see photos from today!

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!

Well, tomorrow, Feb. 28, 2008, kicks off the 35th Annual Houston Livestock Show & Rodeo with the World’s Championship Bar-B-Que Contest and I’m going to be there enjoying my fair share!

Yes, I plan to be there eating all the que I can stand. I hope to get lots of photos to share on my blog and flickr page. It’s going to be a fun night.

Anyone else going to the cook off or Rodeo? (more…)