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

OCT 16, 2009

HEY REGGIE HOW ARE THINGS GOING? I’M IN LONDON HEADING BACK HOME AND I FORGOT TO TELL YOU THAT IT IS MY HONOR TO WEAR MY DEAR FRIEND’S T SHIRT! I LOVE YA MAN BUT YOU NEED TO SEND ME ANOTHER T SHIRT TO SPREAD THE WORD ABOUT YOUR CAUSE CHAMP! ALL THE BEST! SUGAR RAY LEONARD

Guess who is wearing one of my JUST ASK! t-shirts?

You probably already know from the photo you see here. Yes my friend Sugar Ray Leonard. I was so happy when Ray ordered one of my t-shirts. He told me he would be proud to send me a picture of himself wearing my shirt. He kept his word and I have the pictures to prove it. I have known Ray for a long time and he is always supporting my in everything I have done. Imagine someone as famous as him supporting my efforts in NF awareness. He’ll always be the “Champ” in my eyes!

Texas has been lobbying since 1997 to ensure that NF research continues to make progress. Since that time, over 200 million has been contributed to NF research programs. Within the last few years, research funds have steadily been decreasing. However, today I am proud to announce that they are “back up!” The House Appropriations Committee just ruled that another 25 million will go towards the 2010 Department of Defense NF Research program. This is a tremendous victory since last years projects only collected 10 million. That’s a 250% increase!
Thanks to all of you for writing your Representatives, It worked! And thanks to Reggie Bibbs, Sandra and Emily Parker, Dr. Slopis and Dr. Moore for taking the time to personally visit Representative Sheila Jackson Lee.
HOWEVER – The 25 MILLION IS NOT SECURED – YET. We still need YOUR HELP to SECURE THESE FUNDS! Please email, or better yet, hand write and fax a personal letter asking that our Senate approve the House Appropriations proposal of 25 million towards NF research. Thanks again, together we are making a difference!

Senator John Cornyn FAX: (202) 228 – 2856
Compose an online letter to Sen. Cornyn
Senator Kay Bailey Hutchison FAX: (202) 224-0776
Compose an online letter to Sen. Hutchison

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!

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.

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.

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

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.

hey fellow nf’ers its louise here aka wee_lou_c i’m 20 i’m an aquarius as my date of birth is 4th february 1988, i come from the U.K a quaint little town in the bonnie land of scotland it is called glenrothes which i’m guessing is called a state to you guys but its a county here but that is in fife so i’m a fifer. at the age of six i had a biopsy which verified i had nf but i never found this out till i had vision problems at the age of 12 so i was then officially diagnosed with nf2. iv had a little trouble within the years but nothing i couldn’t fight my way through as i believe to get on you have to forget what you have lost and remember who and what you still have. i like to chat as its great speaking about all the different cultures and food and things happening around the world plus i’ve made many new cool friends. i am a complimentary therapist so i like the calm side of life but i’ll never say no to a party. i absolutely love watching lovey dovey films aka chick flicks, i also love scottish stovies they are really braw oh i am sorry i mean good.
take care all and have some fun.

Guess who visited my on line store recently?

Yep, my good friend and also doctor, Dr. Bart Moore of MD ANDERSON CANCER CENTER. He is proudly displaying the items that he purchased at the “Just Ask!” online store a short time ago. Not only is he a supporter of NF and “Race Across America for NF”, he’s also a very cool guy to have on your side.

Could you get your doctor to take a photo like this? I don’t think so! What a great sense of humor. Thanks for sharing your photo Dr. Moore! You’re the best!!!

Check out what people had to say about Bart at my Flickr account.