neurofibromatosis cafe

A place to talk about NF, have fun and share.

Shiner, My New Dog!

Just got Shiner.   Meet my new dog. Shiner is a great dog and I’m thankful to my new friends Connie and Jaen Lawrence. They helped me with making a great home for my dog. We went to the Pampered Pet Inn. When I saw Shiner he came over to me and laid down.  He was just the dog I wanted.  He’s right next to me as I write. He will be watching TVLAND tonight.

Lets talk pets. What kind do you have. What kind do you want?

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September 30, 2008 Posted by | Friends, Fun, neurofibromatosis | , , , | 67 Comments

Psych Ward Sirens #1 in our Hearts!

Last night’s Houston Roller Derby championship bout between the Psych Ward Sirens and the Bayou City Bosses was one for the ages! I thought the Sirens just might pull it out in the end but with 45 seconds left in the bout, two Sirens were in the penalty box allowing Death by Chocolate to run out the clock.

Both teams rocked last night! Although the Sirens may not of won, they certainly came out as winners. I’ve never seen more heart and passion in a sport than what I saw last night.  I think Mistilla the Killa gave Holla-Pain-Yo a complex last night! Every time I looked up, Mistilla was introducing Holla-Pain-Yo to the floor. And Carmen Geddit was steady as a rock!!! All night long. Never giving up. Incredible performance! Jekyll & Heidi had an incredible jam in the first half helping to keep the score close. Congratulations to the Bosses! Both teams played their hearts out.

PHOTOS

September 29, 2008 Posted by | neurofibromatosis | , , , , , , , , , , | 6 Comments

THURSDAY NIGHT AT LOU’S, 9/25/08

Video #1 The Photos Video #2

September 26, 2008 Posted by | neurofibromatosis | , , | 4 Comments

The One and Only Amy at PJ’s! 9/25/08

MORE PHOTOS

September 25, 2008 Posted by | neurofibromatosis | 3 Comments

A blog by my friend Rick in England!

Hi Reggie!

I was looking at your blog – I didn’t realise that you were affected by Hurricane Ike! I’m glad that you are OK! You definitely have more interesting weather in Texas than we have in England!   🙂

The roller-derby looked very cool! That’s when everybody wears roller-skates, right?

I will ask a friend to take a photograph of me wearing my Just Ask shirt tomorrow!   🙂

The NF Camp For All looks totally cool! What types of activities did you do at the camp?

I am still trying to think of the best thing that I could draw for a t-shirt design for your auction or foundation. As you suggested, I could do one-off art for the auction, but I do my art on a computer, so it would have to be a high-quality print-out. Maybe we could print a few and say they are “limited edition prints”?

I have been reading about NF research on the web to get some ideas about a design.

You are a big hero, my friend – you help so many people in such a big way.   🙂

Remember that I mentioned that I have OCD (Obsessive-Compulsive Disorder)? Well, I am going to give a talk to some medical students tomorrow about it, to try to help more people understand about it.

Have a great day!

Your English friend, Rick.

September 24, 2008 Posted by | neurofibromatosis | , , | 9 Comments

Tonight at Beavers in The Heights.

September 19, 2008 Posted by | Friends, Fun, neurofibromatosis | , , , , | 9 Comments

Met new friends at PJ’s “Pork” Night!!!

Yes, you heard me right, it was “Pork Night” at PJ’s last night. PJ said he didn’t have time to pick up steaks but he had some pork laying around so he did that instead. It was excellent!!!

See all the photos from PJ’s Pork Night and the aftermath party at Lou’s.

Last night was GREAT! I met new friends that made a point to talk to me. It was the top of the night for me. I’m not good with names but thank you for talking to me. I hope to see you again. Email me and when I’m back on line I will reply. Both photos from last night look terrific!

September 19, 2008 Posted by | Friends, neurofibromatosis | , , , | 1 Comment

Request from the Texas Neurofibromatosis Foundation

We need your help! We just learned that members of the House and Senate Defense Appropriations Subcommittee will be meeting this weekend to work on the 2009 Defense Appropriations bill.  We need you to contact your members of Congress to inform them of the importance of NF research so we can save the Department of Defense NF Research Program.

Please take the time to call, fax or email your members of Congress.  Ask them to contact Congressmen John Murtha and Bill Young, in the House, and Senators Daniel Inouye and Thad Cochran, in the Senate.  Have your representatives ask Murtha, Young, Inouye, and Cochran to provide $20 million for Neurofibromatosis research through the Army’s NF Research Program in the Fiscal 2009 Department of Defense Appropriations bill.

This is urgent! To find your representatives go to http://www.congress.org.

Thank You,

Texas NF Foundation

Texas NF Foundation is committed to meeting the needs of people challenged with neurofibromatosis by providing care, comfort, support, information, education, funding and other resources for its treatment, prevention and cure.

September 18, 2008 Posted by | neurofibromatosis | | 1 Comment

HURRICAN IKE

Reggie asked me to blog in and let everyone he is ok except that he has no electricity and no internet. But, and I must add, more importantly, I’m ok!!!! I know a lot of people are breathing a sigh of relief and I’m happy to let you know that not only am I alive but I am making a handsome profit selling glasses of water to staring hurricane victims for just $5 a glass. Hey, it’s a national disaster, we all need to do our part

More Photos

September 15, 2008 Posted by | neurofibromatosis | 8 Comments

TEXAS NEUROFIBROMATOSIS CAMP FOR ALL WEEKEND FUN!

Today is September 7th.  Just returned for Camp For All.  If you have never atten The Texas Neurofibromatosis Foundation’s, Camp For All. Trust me. You must attend next year.

I’m feeling really emotional.  Joy and sadness.  I met so many new friends as well reunited with friends from prevouis years.  Some of my friends don’t have NF but attended the camp to support me and have fun.

There are lots of Activities to enjoy.  What I enjoy mose of all.  When a parent or someone that met me on myspace, facebook or the local news, they come to talk to me and just want to talk.  It’s a feeling that I could never express in words.  It’s the greatest support one can ASK for.  For me and the person I have the pleasure of talking to.  It’s like getting a new family member.  And it hurts when it’s time to go home.

The joy is that you can look forward to the next year.   And it gets beter than that. You can keep in contact via email until the next camp. I want to say thank you to all of you for a greak weekend. If you see your photo and you want to add comment please do so. Add you name to it as well in the comment box.  We would like to know ideas you have for nexy year. what you will like to see to make it better. I will pass your ideas to The Texas NF Foundation.

PHOTOS

September 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Texas NF Foundation | , , , | 48 Comments