I was over at Reggie’s with the Just Ask bus when D.R. came up to me and asked me about the bus. I told him what we did and he asked if he could donate but he only had a dollar. I said, “That’s perfect! For a dollar, I’ll even take your photo and put it on the website. So, D.R., here ya go!
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!
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.