Carolyn Farb Endowed Lecture in Neurofibromatosis

Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

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

Reggie

A NOTE FROM KEVIN NEALON.

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.

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

Verizon Theater

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!!!

Charles, June and John Lowe raise over one million dollars for Texas NF Foundation!

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.

CURRENT EVENTS

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.

Reggie on FOX News! Watch the video here!!!

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!

HERE’S THE INTERVIEW!!!

I hope this link works. if not, go to

http://www.myfoxhouston.com and search for Reggie Bibbs.

Texas NF Foundation to stage city-wide fundraiser at Houston’s finest restaurants

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

Reggie Bibbs JUST ASK! ONLINE STORE NOW OPEN

I’m proud to present to you the Reggie Bibbs online Just Ask! Store. We are now open. There are a wide range of new products available.

We can increase awareness of Neurofibromatosis on a wider range, at the same time raise money for neurofibromatosis.

All proceeds will go toward research and awareness. I know you will find a product that will meet your fashion needs. My original shirts can be ordered from my site. The new link will take you to the store.

Happy Holidays and Happy Shopping!

Watch ABC/Channel 13 tonight for my interview with Christi Myers!!!!

That’s right! Tonight on channel 13 my interview with Christi Myers will air. It should be around 6:30pm and 6:45. The interview want very well. We filmed in my bed room, as I was working on my website. I’m looking forward to your comments on the story.

CLICK HERE TO SEE MORE PHOTOS!

CLICK HERE FOR TV INTERVIEW

Reggie’s Blog Makes Google’s Top Ten!!!

Reggie has achieved what major corporations spend thousands upon thousands of dollars to achieve…With no money…With no budget…www.reggiebibbs.wordpress.com is ranked #7 in Google!!!

Go to the Google search engine browser, type in “neurofibromatosis” and Reggie’s blog comes up #7!!! Or, just click on here!

Congratulations Reggie and to all the bloggers who have made Reggie’s blog one of the premier sites for neurofibromatosis education, comfort and fun! Woo-hoo!!!

MY SECOND ASTROS GAME.

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.

MEET A REAL HERO BRIAN CARR

Today I had a terrific afternoon. The Texas NF Foundation had its first picnic in Houston Herman Park. I’m so happy that my family and I had a great day in the park. I met a lot of new friends that have both NF1 AND NF2. I was blessed by each and everyone. Before today, I was not 100% sure if I would go to camp or not. Well I’m 100% sure now. I will be there. I think the new friends I met today was a big part of why I’m going. I found myself talking to other people about going. I think a lot of them learned of the camp today. All seem to want to attend. I would like to see a huge turn out. I will be taking lots of pictures. Be ready to smile.

By now we have seen my hero. Brian Carr. I met Brian and his Mom Virginia. Brian has NF2 and he agreed to have a picture with me. I so happy he did. Brian will visit my blog from time to time. Let’s show him how we do it here. SUPPORT ! I pray for the best for Brian and all of the other wonderful people I met today. Thank you Brian, and I hope to see you at camp. Think about it. You can find a few more photos from the picnic on my photo page. Cindy will have them as well. Thank you Cindy Susan, and the Texas NF Foundation for a terrific picnic.

Houston Roller Derby Stars at Tomball Event, Aug 3!

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!

“Uncle John” Turner Dies

FOR IMMEDIATE RELEASE
Contact: Mark Murray
ph: (512) 587-6833
email: mmurray@kvue.com

“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.

Breakfast with Greg Gorman

Yesterday I received a call from my friend Greg Gorman, the world-famous photographer from Los Angeles.Wow!

Greg asked if we could meet for breakfast this morning. I can’t believe someone as famous as Greg Gorman would take time from traveling to have breakfast with me.

It’s been 10 years at least since we’ve had a chance to visit in person.

Greg, Carl and I had a terrific visit as well as the most important meal of the day. Breakfast. Thank you Greg and Carl for your time today

SHORTS IN HOUSTON

I have a new tripod, so I took this photo of myself working at my computer. I know it looks like I posing for the photo. Well, you’re right. I’m wearing shorts around the house. I wish I had the guts to go someplace wearing shorts.

People always ask for my advice and how do I handle things. Now I ask you, do you have advice me for?

I’m not that strong, but any encouragement or advice you can give me, I’m all ears or leg. : > ) You know living in Houston, you have to wear shorts in order to keep cool.

FORTH WORTH MAYOR MIKE MONCRIEF

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.

Your Bud,
Mayor Mike

MY NEW FRIENDS IN THE UK.

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!

BEDROOM REPAIRS

I call this phase 1. There is bad news and good news. There was a small fire in my room. The good news is that my computer was not damaged. The pictures I have posted are the begianning of the repairs.

Believe it or not, but this is a major improvement. The green wall is gone.

The hole in the wall is repaired. I have a new desk, or work area. I have plenty of room which I did not have before. A lot has been done, and still more improvements are to come. Stay tuned for the finish project. This makes it a lot easer to do my web-site posting and flickr post.

Texas NF Foundation presents $90,000 check to MD Anderson

Today I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

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.

MESSAGES THAT MEAN A LOT TO ME

Today I received a very nice email from John, in Alaska. I am thrilled that what I hope would happen with my site, is happening. Others are learning they are not alone when they see my site as well as other site that support and discuss NF issues. I’m happy that this can be a meeting place to share our stories. We all have stories and anyone with NF is what I would call a real trouper. You are strong and you can make it. Lets support one another. Please read John’s message and give him support. Thank you .

HOPEFUL NEWS IN NF RESEARCH

NZ bee compound gives tumours the buzz-off

By Martin Johnston

Bees collect propolis to seal their hives.

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.

THANK YOU, NET 2

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.

MY MESSAGE

Most of you may know a little about me. My Name is Reggie Bibbs. I have a disorder

called Neurofibromatosis, or NF for short. This disorder causes disfigurement, pain,

blindness, hearing loss, learning disabilities, and yes, even death.

Not only that but most of us who suffer with this disorder have everyday trials that may seem easy for you, but is very hard for us. For instance, how many of you give it a second thought about going out to buy supplies for your computer? You may worry about what you will wear? But that’s probably it.

Boy with neurofibromatosis brain tumour defies the odds

(Reprinted from the Standard Freeholder, Ontario, Cananda)

Boy with brain tumour defies the odds

Trevor Pritchard
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.

SHARE YOUR NF EVENT PHOTOS

I set up an Flickr account for Texas NF photos and I would like people to go to Flickr and upload your favorite photos. Or if you don’t know how, you can send them to me. I will upload them for you. Here is the link. http://www.flickr.com/groups/344939@N24/

Maybe you have pictures from camp you want to share. Or maybe a support group. I hope to see your photos soon.

Please go to www.digg.com and say you “Dig It!”

I just posted the FOX 26 interview about the “Just Ask!” campaign to Digg, an online video news site that is very popular in the blogger world. A video that does well here gets passed around the world very quickly and helps http://www.reggiebibbs.com show up higher in the search engine world. If you could take a moment to go to digg.com and watch the video and click on “Digg It” it would help this site show up higher in Google when you search for neurofibromatosis. Thank you for any help you can give!

NF obituary from today’s Bethel Beacon in Connecticut.

05/18/2007
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.

May is National NF Awareness Month!!!

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.

MORE ON THE NF SYMPOSIUM

The NF Symposium was terrific! I want to talk about how I felt meeting so many new people I can now call my friends. At the symposium, one of my new friends purchased five of my shirts in support of my JUST ASK campaign. I received tons of wonderful messages on the Children’s Tumor Foundation bulletin board. I’m happy to be a part of the board and meeting new friends. You can see from the photo the three of us are happy campers.

NF SYMPOSIUM VIDEO IN THE WORKS!!!

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!!!

NF FAMILY CAMP, CAMP FOR ALL
SEPT 7 – 9, 2007
Burton, TX

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