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

I got the surprise of my life today. Well it shouldn’t have surprised me. Sugar Ray has always been a supporter of my work in JUST ASK.  Sugar Ray wrote me.  He said, he needs a new Just Ask t-shirt, so he can continue to wear my shirt and help spread awareness of neurofibromatosis when he travels to other countries.  This is great to have someone as famous as Sugar Ray Leonard to be involved with making a difference in the  JUST ASK! campaign.  Sugar Ray always ends his notes by calling me the Champ. Sugar Ray is the real Champ!

Thank you Sugar Ray.

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 (more…)

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.

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 www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

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

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

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Today, Lou and I had a meeting about the blog, website and future plans. Everything went Terrific!

While at STANANDLOU, we took a few pictures after the meeting. I’m looking forward to the exciting things we have planned for the website. Of course, I came up with most of the ideas so don’t give Lou all the credit.

Anyway, I will be heavily involved helping the Texas Neurofibromatosis Foundation with their search for a cure for NF. I want to help with their events for 2008. I know I will go to the NF camp this summer.

If you are a regular on my blog, it might be a good idea to start spreading the word about the blog to your friends that have NF. The blog is a good place to find out about upcoming events and also just to share information and have fun, too!

I think people have fun here even if they don’t have NF. Just ask Shelley, Arthur and Lou. Never mind, don’t ask Lou!!!

Dear friends, while I was up in Dallas last week helping with the Denise Terrill Golf Classic benefitting NF, I got to talking with a few members of the Texas NF Foundation and we think it’s time that Houston had their own NF support group again.

Back in the 90′s, the Texas NF Foundation actually had an office here in Houston to help those in the area afficted by NF to get the medical help they needed. And just as important. support in their daily lives. (more…)

Lou and I went to the Uncle John Turner Benefit at Dan Electro’s Guitar Bar today and had a blast! Uncle John Turner is a pretty famous drummer who is in dire need of a liver transplant. Uncle John has played and jammed with some really cool dudes like Johhny Winter, B. B. King, Jimi Hendrix, Freddie King, Muddy Waters, Junior Wells, Lightnin’ Hopkins, Johnny Copeland, Albert Collins, James Montgomery, Paul Nelson. and many more.

Yesterday afternoon was my first Blues concert! I got to hear some terrific music with Lou. I thought, this would be the perfect chance to reach more people, and tell them about NEUROFIBROMATOSIS. I said sure. Oh wow! I’m happy I went. I met so many nice people who treated me just as I want to be treated. No one stared, No one laughed, Only one seemed uncomfortable setting next to me. I met a lot of people, who I would never have met if I had not gone to the concert. The music was great. What a great benefit! I was proud to be there to help support the cause.

Some of the performers who donated their time and talent include Sonny Boy Terry with Little Ray Ybarra, Paul Orta, Texas Johnny Brown, Hightailers w/Little Screaming Kenny, Jerry LaCroix, Ezra Charles, Michael Milligan & the Altar Boyz, Rehabiliteens w/TC Cannon, Allison Fisher Orch w/Teri Greene, Erin Jaimes, Eric Tessmer and Gary Clark Jr. EMCEE was KPFT 90.1 FM’s Blueshound

Click here to see photos from the benefit and help me identify some of the performers! More info: www.uncathon.com

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