My new Friend, Ed Port, needs your help.

From: Ed Port <gbg@ameritech.net>
Date: December 27, 2008 2:56:15 AM CST
To: reggie@reggiebibbs.com
Subject: Hello Reggie from Ed Port
Reply-To: gbg@ameritech.net

Thank you for the e-mail MIke forward it to me. How did yo hear about my story?  I fist saw you on the O about a year ago when I was flipping thou the TV chs   Mike has been trying to help me get my story out.  I ws chatting with friend today on yahoo that lives in  Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.

I would like your imput on anything that would help make the website better.  I wike your store very much it would great to speak to you

http://www.edneedsamiracle.com/

Ed Port

Youngstown Ohio

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.

Let’s Go To The Texas Renaissance Festival!!!

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.

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

TEXAS NEUROFIBROMATOSIS FOUNDATION AND CAMP FOR ALL

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.

Reggie and the Neville Brothers

How can I begin to tell you how much fun I had yesterday at the International Festival. The day stated out very well with meeting people who have seen me before. There where happy to take photos with me. I was remembered from last year. The food was terrific music was great. All types of music. I enjoyed the country music of course.

The best part of the evening was music from the Neville Brothers. Arron Neville. I actually got to meet the Neville brothers. A very big thank you to the Neville brothers for taking time to meet and take photos with me. Also thanks to my friends who joined us, Matt Jones, “The Tall One” and William Hughes, “The Smart One.” I said man I would love to meet the Neville brothers. Matt said, “I bet I could make that happen.” Well, he did and you see the photos as proof. I have to tell all of you I had the best time ever.

SEE PHOTOS OF CONCERT AND BACKSTAGE

It would be a really good thing if we could get a group together and do what I have been doing for a year. I can promise you it will change how people feel about NF, and you will feel better that you did it. Whether you have nf1 or nf2, it is a great thing to let people get to know who we are. I would really like my friend, Brian, to go with me some time. I really think people are more understanding now. It seems to me that people expect me to be there. How cool is that?!! Next stop, the “Art Car Parade!”

Rodeo Night With Martina McBride

Tonight was another great night at the Houston Livestock Show and Rodeo!

I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.

Click here to see photos from today!

I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.

I know why she loves Houston. I feel it every time I go out. So many people here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!

National Doodle Day Benefiting Neurofibromatosis

I spoke with Mari Garcia administrator of Gillian Anderson’s Official Web Site, I was asked sometime ago to help out and to contribute a doodle for NF, Inc’s Second National Doodle Day Auction. I was happy to post a blog and do what I can to be of help. Please check out the links and see your favorite Actors and actress and others who have support the fight against NF.

The auction will start on May 8 on eBay. So far there are two pages and more doodles will be added as they come in. Be sure and blog your favorite doodle.

NF, Inc. is raising money for neurofibromatosis through their annual National Doodle Day! As part of NF Awareness month, celebrity doodles will be available for auction on eBay.

These doodles have a very important aim: the funds they raise will benefit NF, Inc., an organization dedicated to providing support to individuals and families affected by neurofibromatosis (NF).

Neurofibromatosis is a genetic disorder that affects one in every 2,500 births. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined. Funds raised from the Doodle Day auction will go to support education, advocacy, coalitions, and research for treatments and a cure.

To learn more about NF, please visit http://www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

35th Annual 2008 World Championship Bar-B-Que Cookoff

Well, tomorrow, Feb. 28, 2008, kicks off the 35th Annual Houston Livestock Show & Rodeo with the World’s Championship Bar-B-Que Contest and I’m going to be there enjoying my fair share!

Yes, I plan to be there eating all the que I can stand. I hope to get lots of photos to share on my blog and flickr page. It’s going to be a fun night.

Anyone else going to the cook off or Rodeo?

HATS OFF TO THE COMCAST REPS IN HOUSTON / JERRY’S BACK FROM IRAQ!

 

On Valentine’s Day, I went to Comcast. I had a problem with my cable box and I took it back to Comcast. A customer service worker waited on me. Denise was very nice and helped me with my problem. It was then that she told me how happy she was to see me. And that she had seen me on TV. All of the customer service people were just as nice as Denise. I had to go back today so I asked if I could take their photo to put on the blog as a way to say thank you for being so nice. It’s nice to know that a company as big as Comcast can have employees as nice and personable as Denise and her friends. Please, if are in you the area, show some love to the great job the ladies are doing at the Bellaire location. Thank you Denise. And of course Phelisia, Patricia, and Jennifer. What a Sweet Heart of a Day for me!

WELCOME BACK, JERRY TURNER!
Hey Reggie,
I made it!!!!For everyone who has never experienced a 17 hour non-stop flight……Don’t do it!!! I thought it would be worth it not to stop in Europe on my way back, but it’s not. At some point in there you need a break. With about 4 hours to go in the flight I was in absolute misery. I’ll give you a buzz tommorrow.
Jerry T

 

Meet Reggie Bibbs – I have neurofibromatosis

My name is Reggie Bibbs. I am on a mission to spread the word about neurofibromatosis. I figure the more people who know about my disorder, the more they will understand me, so I made a video. Actually, I’ve made a few videos. They can be seen on my website, blog, YouTube, Veoh and Vimeo as well as photos at my Flickr, Facebook and MySpace account. If you have neurofibromatosis or if you’re wanting to help spread the word, please click on the links above, leave a comment, send an email, add the urls as links to your blogs and sites or send to your friends and fellow NF people. The more we can band together, the stronger our voice will be heard. I thank you for reading this far and I truly hope to hear from you soon!

Make it a TREMENDOUS Day! – Reggie

2008 Houston Livestock Show and Rodeo

Houston, It’s almost time to Rodeo!

Cowboy Up, America! When a cowboy’s in a pinch, he just tightens up the cinch, spurs his horse and rides right through it, cause that’s the way the Duke would do it. He’d Cowboy Up.

This year it’s going to be another terrific year for the Houston Livestock Show and Rodeo. Just as I did last year, I will be there enjoying all activities for the 2008 show.

This year I plan to see more of the livestock show then I did last year. As for music, there are several performers I want to see this year. There are two I have in mind now, that I want to see Rascal Flatts and Tim McGraw I will see more then one, I hope. All that to look forward too, and I haven’t even started on the great food.

How many of you are planning to go the the Rodeo, and who will you see? It would be a great idea if any of you go, to take pictures and send me a photo and I will make a section for our photos for this year on the blog and Flickr.

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!

WHAT IS YOUR FAVORITE MOVIE

I have a question and I’m adding to my new blog. Lets talk movies. What was your favorite movie of all time? And if you where going to the movie this weekend what movie would you pay to see?

Remember let’s keep this blog on movies. Maybe we can get some ideas of the best movies in our own option. a friend of mine told me I should see the movie 300. I’m not sure if this is a new movie. Have any of you seen the movie. I enjoy going to the movies. Just want to know what are the best ones to see. One of the radio stations ask that question and I think its a good one.

The movie you watched when you were younger, would you say you still like it as much?

TEXAS NF FOUNDATION’S CAMP FOR ALL WEEKEND.

I wanted to let you know we are home from a TERRIFIC weekend at a
wonderful place called CAMP FOR ALL, In Burton Texas. It is an amazing place for persons with disabilities. I would give this place a five star rating. A big thank you to the kind staff. It was my first time and will NOT be my last time. Looking forward to next year. I also want to thank the Texas Neurofibromatosis Foundation for Helping my family to be a part in the Fun. Let spread the word and try to have more campers next year. I hope you will join us next year. You will love it. PHOTOS

NF CAMP THIS WEEKEND

Hey guys and gals Just want to let you know where I will be this weekend. Burton Texas for the annual NF Camp. It’s been years since my last NF camp, and I’m happy to have this chance to go this year. I will get to see a lot of my friends from the other times I have gone. If you are not able to attend, don’t worry I plan to take lots of photos that you can see here and on my photo page. And all of you that can’t make it this year I hope you will plan to come next year. So lets talk camp today.

REGGIE VERSUS ADGIANT

I hope you are enjoying the blogs and the fun we are having here, as we learn about Neurofibromatosis. We are here for everyone who has NF or has a family member with the disorder. I support you as well as my friends on my blog. Let’s continue to share our stories and information with each other about NF. With all that being said, I would like to share a photo with you. My friend ADGIANT or better known as Mr. Smart Mouth. This was a dream come true shoot. The only bad thing about this, is the photographer didn’t let me finish.

SHARING MY MESSAGE FROM TAMMY, LET’S WELCOME OUR NEW FRIEND.

I received this wonderful message from Tammy. Tammy was nice enough to let me share this message. I am always encouraged when I get messages like I have been getting from you all. It’s good therapy for all us to meet here and support each other in time of need. Oh and not to forget all the fun we lave here, as we learn about NF together. Lets start supporting Tammy and Austin. That’s what we do here right. Maybe we can talk Tammy into send a picture to add with her blog. What do you say Tammy? Hope you see you here soon.

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

4TH OF JULY CELEBRATION

Hello Friends We are coming up to another day of celebration. Wednesday July 4th Houston is having a day of fun, music and a large display of fireworks. Come join the fun! I plan to be there wearing my JUST ASK t-shirt and would be happy to meet new friends. I always get a little nervous at these large events, but I’m sure with the great people we have in our great city, I will have a TREMENDOUS time. I hope to get some pictures meeting more friends. See you there.

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!

“JUST ASK!” IS OFFICIAL

Today I went to the Harris County Court House and filed JUST ASK! as a DBA in the STATE OF TEXAS. I am so happy! This is terrific news because it makes me feel that what I’m doing is very real: To the State of Texas and to the people who are affected by neurofibromatosis.

Not only did I file a DBA but I also opened a business checking account at Compass Bank under the name “Just Ask!” The checks will have my logo on them (drawing of my face) and “Just Ask!”

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 .

TASTE OF TEXAS FUN

People are beginning to JUST ASK! This is GREAT! Friday night my family and I went to one of our favorite restaurants. Taste Of Texas.

We had the best time I can remember. It was 15 of us. Sisters, nieces, nephews, brother sister in-law,and Mom. Of course ME ME ME! We all sported out JUST ASK t-shirts. We felt like stars. We got a lot of smiles and people commenting on our t-shirts. Lots of you ASKED. I thank all of you that wanted to know. It was a wonderful family night for us. Thanks to the Staff of The Taste Of Texas. You did a TREMENDOUS job as always!

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.

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.

ADDY AWARDS

I thought it would be nice to show some of the addy awards we won in neurofibromatosis. The awards are for the PSA and the work that is going on with the website. It is because off all the support you are giving. keep visiting my site and the blog. I thank you for your support

This show that we are starting to get notice. This is what we want. Its only the beginning. It a start of something big. I’m sure there will be more to come. You can rest a sure I will post the others when we receive more.

REGGIE’S HOBBIES (COOKING AND BAKING)

  Most of you who know me, know I love baking and preparing large meals for my family relatives and friends. Sunday’s are always fun.  That is the day the largest meal is prepared.  Yesterday was a nice meal, and I would like to share some photos with you.  Now this wasn’t the best meal, but we all enjoyed it and are very thankful that God provides for all of us  It you have some photos of what you enjoy cooking, grilling, or baking share your your photos and comments. And if you have tips that would be terrific.  I know I can use all the tips I can get.  Looking forward to your comments.   My favorite cake to bake is German Chocolate Cake.  And Cobbler.   Peach and Berry cobbler. You will get to see photos of that soon.  I would love to love to see your photots.