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
HOUSTON ROLLER DERBY HONORS REGGIE BIBBS THIS SUNDAY NIGHT! TICKETS ARE GOING FAST, GET YOURS TODAY!!!
Speaking of the roller derby, mark your calendar for August 10 as the Houston Roller Derby honors a certain person on this blog who will remain nameless.
Houston Roller Derby
Sunday, August 10
Doors open at 4pm
Bout starts at 5pm
Downtown – Texas at Bagby (LOTS OF STREET PARKING AND THEATER PARKING)
DON’T FORGET TO WEAR YOUR “JUST ASK!” T-SHIRT!!!
Please make plans to attend and wear your Just Ask! t-shirt. Don’t have one, no problem! We hope to be selling them before the match!Advance tickets are just $10 online, $15 at the door!
Come see all of your favorite skaters including Dementia, Mistilla the Killa, Jeckyll & Heidi, Carmen Geddit, Death by Chocolate and more!!!
SPECIAL THANKS TO ALL THE SKATERS, FANS, REFS AND FRIENDS WHO HAVE MADE GOING TO THE ROLLER DERBY EVERY BOUT A WONDERFUL EXPERIENCE! YOU HAVE NO IDEA HOW MUCH THAT IS APPRECIATED!!!
Texas Neurofibromatosis Foundation Newsletter
Charles, June and John Lowe raise over one million dollars for the foundation!
Charles, June and John Lowe raise over one million dollars for the foundation! The Lowes have been with the foundation since the very beginning and have been raising funds through a weekly bingo session since 1988. Their devotion and contributions are more than appreciated, they are our inspiration and the backbone of this foundation.
Senator Harkin speaks out for NF! For the past several years, Senator John Harkin has sponsored an “NF Dear Colleague letter.” This letter was drafted to ask that all US Senators support NF research through the Department of Defense Appropriations Committee. These effort are the very reason scientific advancements have been made towards a cure for NF! Please join us by personally thanking Senator Harkin for his continued support.
JULY Summer Family Picnics: Bring the family and meet others in the Houston, Dallas and San Antonio areas!.
June 26, 2008: Support Group Meeting, Dallas, TX
Sept. 5-7, 2008: NF Family Camp, Burton, TX
Sept. 23, 2008: Friends FORE Friends Golf Tournament, Richardson, TX
October 18, 2008: Spam OH! Rama, Irving, TX
2008 Symposium: Dallas, TX. More details to come. Continue reading
Watch the interview that has all of Reggie’s blog talking as FOX News 26 interviews Reggie Bibbs. Damali Keith revisits Reggie to see how he has adjusted to life now that he has taken his disorder, neurofibromatosis, yo the public through his “Just Ask!” campaign.
There’s even an appearrance by Lou and some of his staff!
I hope this link works. if not, go to
http://www.myfoxhouston.com and search for Reggie Bibbs.
Last night, Lou and I attended a special committee meeting to help plan and execute a fund-raiser to help those with NF in the Houston area. The fund-raiser will be held on Tuesday, April 22, 2008, at the Hotel Derek, in the Galleria area of Houston.
I am proud to be Honorary Chairman of this important event and I hope all of my friends can join me in this very worthy cause! Below is a letter from our Houston Highlights Chairman, Ishma Blackwell, detailing the event. It’s going to be a lot of fun!
DOWNLOAD INVITE 2438_001.pdf
Today was my second Astros game. Before the game, my friend Lee told me, “You have to have a Astros shirt.” So went to one of the local stores and Lee said pick the one you want. This is a cool shirt. That was the first thing we did. The high before the game was the food. I had the best Chile cheese hot bog ever, and a nice cold Coke to wash it down. mmmmm! By the way this is my first Astros shirt. I send thanks to my friend Lee, who invited me to join him with his daughter Rebecca and her friend Blake. Both are very nice and they treated me very well. We enjoyed the game, even though our team did not win, we still support the Astros and I will be happy to see them anytime. Go ASTROS! You are winners in my eyes. Please view the pictures from the game and lets blog about it.
One of the best sporting events in Houston, in my opinion, is the Houston Roller Derby at Verizon Theater. I have been at least three times, and all I have to say you must go if you haven’t been. If you think it’s all fake and everything is rehearsed, think again. These ladies are tough!!! And some of them are real mothers! (No joke intended.)
I have enjoyed every game. They really treat the fans like they are the stars. I’m building quite a collection of photos with a lot of the team members. I still haven’t taken photos of everyone yet. Luckily, all of the team members are very accessible before and after the matches to talk, sign autographs, take photos and hang with audience members.
Hope to see you at one of the bouts. I know I will be attending as many bouts as possible.
Their next match isn’t until the third Sunday in August at the Verizon Theater downtown but many Houston Roller Derby members will be at the 35th Annual Tomball Night
Celebration in Tomball!
This would be a great opportunity to come meet and talk with your favorite Houston Roller Derby stars! I’m hoping to get a complete list of all planning to attend so as soon as I get that, I’ll post it here!
Here’s all the important details:
Date: Friday, August 3rd
Time: 5pm – ??
Cost: FREE- so come hang out!
Where: Bob’s Wild West
Address: 400 W. Main, Tomball
Directions: Take 249 North, turn Right on Main
Fun, Food, Music, Prizes, and Fireworks!
See ya’ll there!
FOR IMMEDIATE RELEASE
Contact: Mark Murray
ph: (512) 587-6833
“Uncle John” Turner
August 20, 1944 – July 26, 2007
Legendary Texas Blues Drummer Dies at 62
B.B King once exclaimed, “Man, I can set my watch to your time!”
Legendary Texas blues drummer “Uncle John” Turner died Thursday, July 26th, in Austin, Texas from complications related to hepatitis C. He was 62 years old.
Born in Port Arthur, Texas, Uncle John was a childhood friend and bandmate of legendary southeast Texas blues and rock guitarist, Johnny Winter. While playing drums with Winter in 1968, Turner convinced him to try a full-blown blues band format and sent for his friend Tommy Shannon to play bass. Success quickly followed, and the trio went on to record what many consider to be three of Johnny Winter’s finest albums: “The Progressive Blues Experiment,” “Johnny Winter,” and “Second Winter.” With fourth member Edgar Winter, they played Woodstock in 1969, as well as numerous other festivals and shows around the world. Continue reading
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! Continue reading
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.
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. Continue reading
Last night I was invited to speak with Net 2 about my website, and neurofibromatosis. Wow! What a tremendous experience it was FOR ME. A great group that was very interested in neurofibromatosis and my campaign. I was able to share what it’s like to live with nf , and how I deal with it. I learned a lot from the group as well as I hope they learned more about nf. I feel blessed that the group received my message. Meeting Net 2 was just what I needed. Maybe if I hang around the group, I can learn more tips about making the perfect site for neurofibromatosis.
(Reprinted from the Standard Freeholder, Ontario, Cananda)
Local News – Saturday, May 26, 2007 @ 08:00
On the rare occasions he’s not giggling or laughing, it’s apparent five-year-old Devon Payette’s speech is slightly garbled.
His bright red hair is shaved close to his skull, where he has a four-inch scar, and he stumbles slightly as he walks – possibly the result of being blind in one eye. Continue reading
Zowine’s accomplishments, not illness, recalled
By: B.J. O’Brien
(Reprinted from website of Bethel Beacon)
Henry Zowine, a lifelong Bethel resident, might have had a disability but he didn’t let that stop him from accomplishing a great deal in life.
Mr. Zowine, who suffered from neurofibromatosis, died Saturday at his home in the presence of his family. He was 45 years old (see obituary, Page 7).
Neurofibromatosis affects the brain, spinal cord, nerves and skin. Those affected by it get tumors on the nerves in their ears, which causes hearing loss and eventual deafness. They can also have problems with balance. The disease can also cause the loss of eyesight.
Neurofibromatosis is a genetic disease. Mr. Zowine’s son Zack, 16, also died from it a few months ago.
Neurofibromatosis: New Research, Clinics Offer Hope
Newswise — After ten years and $217 million worth of “bench to bedside” research, there are signs of hope in the medical community and among the 1 in 3,000 individuals worldwide who have neurofibromatosis (NF), a serious neurological disorder that causes tumors to grow on nerve sheaths throughout the body, according to the Children’s Tumor Foundation (CTF). And, that is something to celebrate during May, 2007 which is National NF Awareness month. Continue reading
For all of you who missed the NF SYMPOSIUM presented by the Texas NF Foundation, we will be posting the presentations online just as soon as we can convert them to the proper format for easy streaming. Unfortunately, I need to rely on the kindness of strangers to get this type of processing done but soon it will be done! Thank you Texas NF Foundation for allowing me to record video and take lots of photos to share on my website. It was a Saturday full of great fun, great friends and great information!!! Plus, I made a lot of new friends!!! If you have never gone to one before, I definitely recommend you attend the next one. AND CAMP CAMP THIS SUMMER IS A MUST!!!
The Texas NF Foundation is thrilled to bring you the 16th Annual NF Family Camp. The purpose of this camp is for families affected by NF to connect with one another in a place where our commonality is NF. It will be a time to learn and laugh as we make meaningful relationships with new friends and grow closer to our own families.
More info: http:/www.texasnf.org
- 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