neurofibromatosis cafe

A place to talk about NF, have fun and share.

“Dear Congressman, we need money for NF research!”

3273717777_fbd42738b0_bFriends and Colleagues –

As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).

It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write. Continue reading

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March 16, 2009 Posted by | neurofibromatosis, Research, Texas NF Foundation | , , , , | 7 Comments

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

September 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Texas NF Foundation | , , , | 48 Comments

Houston NF Pizza Party, July 12!

Come meet all the friends you’ve met on Reggie’s blog and website. FREE PIZZA!!! FREE DRINKS!!! FREE GAMES!!! If you or a family member has NF or you just want to help spread awareness of NF, please rsvp today!

You don’t have to be an expert to hold a support group meeting. Just a desire to meet other’s with NF! Support group meetings can be as casual as getting together with other NF family members over a cup of coffee, to holding a meeting with a guest speaker. So get to know others in your area by requesting a “Support Group Starter Kit.” For more information contact Patient Outreach.

HOUSTON SUPPORT GROUPS
Saturday, July 12th, 2008: Houston Family Picnic view invite
11:00 a.m. – 1:00 p.m.
Zuma Fun Center
6767 Southwest Freeway
Houston, TX
Pizza, soft drinks and tokens provided.
**RSVP by July 7th by contacting Jennifer Kronvall
(limited number of seats available)

June 22, 2008 Posted by | Friends, Fun, neurofibromatosis, Texas NF Foundation | , , | 10 Comments

Friends of Neurofibromatosis Group on Facebook

Dr. RiccardiTo all my friends who are reading this blog, I’d like to introduce you to my “Friends of Neurofibromatosis” group on Face Book. We have quite a few members now, over 70. I am now in contact with a few good friends that I had lost contact with from the 1980s. My friend Dr. Vincent “Vic” Riccardi is now part of our “Friends of Neurofibromatosis” group. I’m sure anyone who has NF may know him or have heard of him. Dr. Riccardi is a legend when it comes to neurofibromatosis research and treatment. He has not only been a good doctor, but a good friend. He has done a lot for NF. At one time he was on the Board of the Texas Neurofibromatosis Foundation. He was its Medical Director for many years helping decide where to give the money we raised for research. Hopefully, maybe we could get him to come to the blog from time to time.

n71001931_31763618_8129.jpgTwo other friends have showed up too! Megan Phillips and Andy Ganster are now online with us. Megan, Andy and I shot some TV commercials with Lou back in 1989. That’s when we first met Lou through Bob Hopkins, then the TNF Executive Director. Those were some pretty serious commercials but they helped neurofibromatosis get some much needed awareness.Andy Ganster

I hope anyone visiting this blog will also join us on Facebook as well. We will all learn as we go alone on Facebook. The games and quizzes are fun and challenge. It a good way to find friend you may have lost contact with. Believe me, I know!

Here is the link!

February 20, 2008 Posted by | Awareness, Facebook, Friends of NF, Friends with NF, Fun, neurofibromatosis | , , , , , , | 315 Comments

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

Texas NF Foundation to stage city-wide fundraiser at Houston’s best restaurants2008 Houston HighlightsLast 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

Continue reading

February 2, 2008 Posted by | 2008 Houston Highlights, Awareness, Benefit, Friends of NF, M.D. Anderson, neurofibromatosis, News, nf, Organizations, Restaurant, Texas NF Foundation | , , , , , , , , | 154 Comments

Ok, Reggie, whose butt did you have to kiss for this?!!

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Reggie,

Per our conversation on the phone, I would like to welcome you to the Honorary
Board of the Texas Neurofibromatosis Foundation. It is a privilege to have you on the board.
The foundation appreciates all you have done for Texas NF and NF awareness.

We look forward to working more with you in the Houston area.
Talk to you soon.

Cindy Hahn, M.Ed., Managing Director, Texas Neurofibromatosis Foundation Continue reading

January 17, 2008 Posted by | About Me, Awareness, Fundraising, neurofibromatosis, nf, NF in the News, Organizations, Research, Texas NF Foundation | , , , , , | 218 Comments

Reggie’s Meeting at Lou’s Office

reglousmall.jpgToday, 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!!!

January 8, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Adgiant, Awareness, Benefit, Blogs, Friends, Friends of NF, neurofibromatosis | , , , , , , , | 210 Comments

Reggie Bibbs JUST ASK! ONLINE STORE NOW OPEN

cup8x10.jpgI’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.

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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!

December 22, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Adgiant, Appearances, Awareness, Friend, Friends of NF, Fun, Fundraising, Just Ask!, neurofibromatosis, News, NF1, NF2, Reggie's Search Machine, T-shirt, Texas NF Foundation | , , , , | 141 Comments

PLEASE HELP ME & THE TEXAS NF FOUNDATION SET-UP HOUSTON NF SUPPORT GROUPS AND EVENTS

logo.jpgDear 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. Continue reading

October 28, 2007 Posted by | Benefit, Favorite Places, Friend, Friends, Friends of NF | , , , , | 58 Comments

Reggie Bibbs – Denise Terrill Golf Classic Benefitting NF

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Reggie was asked to say a few words and, from what I heard, did a tremendous job!

The Denise Terrill Charity Classics is an organization of volunteers whose purpose is to organize and operate the Denise Terrill Charity Tennis Classic and the Denise Terrill Charity Golf Classic. The goal of these charity tournaments is to raise money for research to find a treatment and cure for neurofibromatosis-2.

CLICK HERE TO WATCH NEWS STORY ON DENISE TERRILL

CLICK HERE FOR PHOTOS

October 25, 2007 Posted by | Awareness, Denise Terrill Golf Classic, Fundraising, neurofibromatosis, Research, Texas NF Foundation | , , , , , | 15 Comments

NF CAMP THIS WEEKEND

729368094_5026a66232.jpgHey 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.

September 6, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, Fun, NF1, NF2, Texas NF Foundation | , , , , , , | 51 Comments

A new friend has joined us, Patricia Stokley

l_934dd3b2740501532f7c7e493f37cadd.jpgHi Reggie

I am so glad I found your web site, I have looked at several different NF websites and all I ever saw was support groups for children, not that I don’t think kids don’t need support, they do, I know how mean kids are so very mean. but adults need support also,

I do feel that I am luckier then a lot of other people with NF, most of my complications are hidden except for my speech I had to take years of speech in school, I could not even call my sister by her name, Linda, it was too hard, my tongue is deform in the back, I have a hard time hearing, I can hear noise, but so many times I just cant understand what is being said, and i know people get aggravated with me when i ask them to repeat themselves more than once, but I just cant understand, I have seizures, and there are few other problems I have I only have a few of the tumors (my mother always called them bumps) and a lot of the cafe spots (my mother called them birthmarks) Continue reading

September 2, 2007 Posted by | A MESSAGE FROM REGGIE, Friend, neurofibromatosis | , , , , | 85 Comments

Minerva and Robert Terrill’s Story (Video)

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Raising awareness of the disease their daughter has been fighting since she was 4 years old has been a top priority for Minerva and Bob Terrill of Dallas. Denise Terrill, now 29, has neurofibromatosis, a disease that has caused tumors to grow along her central nervous system, severely damaging her brain stem.

Dr. Bob Terrill, Denise’s father and a dermatologist, diagnosed his daughter’s disease when she was a toddler. Since then, Denise has endured 18 major surgeries, the first of which occurred in 1990 and resulted in her hearing loss. Confined to her bed for almost 10 years, she has lost sight in one eye. She requires a ventilator to breathe and receives nourishment through a feeding tube. Continue reading

May 22, 2007 Posted by | Friend, neurofibromatosis, Texas NF Foundation | , , , , , | 5 Comments

SHARE YOUR NF EVENT PHOTOS

charles-reggie-bob.jpgI 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.

May 21, 2007 Posted by | A MESSAGE FROM REGGIE, Links, neurofibromatosis, News, nf, NF1, Photos | , , , , | 5 Comments

Texas NF Foundation, NF Family Camp, September 7-9, 2007

camp_all.jpgNF FAMILY CAMP, CAMP FOR ALL
SEPT 7 – 9, 2007, Burton, TX

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. Continue reading

May 20, 2007 Posted by | Favorite Places, Friends, Fun, neurofibromatosis, Texas NF Foundation | , , , , , , | 5 Comments

A Letter from Suzanne Miller – President of Texas NF Foundation

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A heartfelt thanks to our Neurofibromatosis (NF) families, doctors, volunteers, board members and donors for making the foundation a home for patient support and research for the past 25 years. You have made a difference in the most tangible, human way.

If you are new to the foundation, you have picked an important time to learn more. The year 2007 holds real promise for NF patients who have been told for decades to live with a crippling and sometimes fatal disease that has no cure and no treatment.

But critical research is going to clinical trial as I write this letter with signs that tumor growth can be stopped and implications that are enormous for both NF and cancer patients.

To ensure this kind of research continues, several NF foundations from around the country came together in D.C. this month to lobby Congress for continued research money. We are asking for $20 million in 2007 to continue the momentum of the $182.3 million dollars that have been invested in NF research since 1996 by our government and the Department of Defense.

I fully intend to look my son Drake in the eyes one day to tell him my husband Steve and I were part of a great big network of people who helped cure NF. I hope you will join us in whatever way you can to make that vision a reality for all NF patients.

Sincerely,

Suzanne Miller
President
Texas Neurofibromatosis Foundation

What can you do?
Join us for Dining Out in Dallas on April 12.
Write a letter to your congressmen or senator asking for continued research funding
General donations
Send an NF patient to NF Family Camp

April 26, 2007 Posted by | neurofibromatosis, Texas NF Foundation | , , , , , | Leave a comment

ATTENDING THE MAY 5TH NF SYMPOSIUM

To all of you have have been supporting me, by your visit to my site and leaving comments on my blog. I do plan to attend the nf symposium. May 5th is the day I have marked on my calender. I would love to meet all of you that have been a part of the great things that are happening on my site. I will be proudly wearing my JUST ASK t-shirt. I hope to see you there. If you plan to attend. post it here. Looking forward for making new friends.

April 18, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, neurofibromatosis, Texas NF Foundation | , , , , , , | 6 Comments

Reggie Bibbs receives Gold Addy Award

Feb. 22, 2007, 10:15PM
Reggie Bibbs receives Gold Addy Award
Second Baptist Church member honored for advertising campaign

By KIM HUGHES
Chronicle Correspondent

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Reggie Bibbs, a member of Second Baptist Church on Woodway, was looking fine in a suit and tie recently when he went on stage to receive a Gold Addy Award for his advertising campaign to raise awareness of a disfiguring disorder called neurofibromatosis.

It was a dressy affair at the Hyatt Regency Hotel downtown, which is why Bibbs, 42, wasn’t wearing the T-shirt that won him the award.

On the front is an abstract outline of Bibbs’ face, and on the back are the words “Just Ask.”

“I can see how people look at me, and they will just stare,” said Bibbs, who was diagnosed with neurofibromatosis as an infant, and has several tumors on his left leg and face.

“Some of them look at me like I’m an apparition. You can see they want to ask — but they don’t — and it puts both of us in an awkward position.

“I want them to know it’s okay to ask me what’s wrong (with me).”

Originally from Houston, and still living in the same house he in which he grew up, Bibbs said his mother first noticed something was amiss when she would try to put his shoes on his little feet.

His left shoe just couldn’t go over his foot very easily, and he would cry whenever she tried.

Bibbs was diagnosed with neurofibromatosis when he was about 1-year-old.

According to the National Institute of Neurological Disorders and Stroke at www.ninds.nih.gov, neurofibromatosis affects an estimated 100,000 Americans and occurs in both sexes and all ethnic groups.

It’s a genetic disorder of the nervous system that causes tumors to grow, and can produce other skin abnormalities and bone deformities.

“They told her there was no cure for it, and the only thing they could do was follow me,” Bibbs said.

He was fitted with special shoes, and Bibbs has since undergone about 10 surgeries to remove tumors from the roof of his mouth, his leg, nose and eye.

Bibbs said surgery is not usually a recommended course of action, because doctors believe removal of existing tumors propagates growth of new tumors.

Growing up, Bibbs said his five brothers and sisters were protective of him, and he knew at a very early age there was something different about him.

“I knew my eyes did not look like my brothers’ eyes, I knew I couldn’t see very well out of the one eye,” Bibbs said.

“Different parts on me were bigger. And as I grew, the tumors grew.”

Bibbs recalls the day, when he was about 10, when his brothers were tromping through mud puddles, leaving bare footprints on the sidewalk.

“My footprints, one would be the regular size and the other one would be really big,” Bibbs said.

“I would wish I could make the same kinds of footprints everyone else was making.”

Bibbs learned to accept and love himself, with the help of his mother, siblings and neighbors.

“We did a lot of praying and trying to encourage Reggie to just not worry about it,” said Dorothy Bibbs, 70.

Reggie and Mom in “Just Ask!” t-shirt.

“He always had someone with him wherever he went, and the neighbors were very helpful. They didn’t see him as having a deformity.”

Bibbs also credits his faith for getting him through.

“I know that God has really blessed me in so many ways, that I cannot begin to really express it,” Bibbs said.

“He has given me strength just to go on, and I have met so many wonderful people.”

That includes Gary Moore, senior associate pastor.

“Reggie is so faithful and he’s always here,” Moore said. “You look out there, and Reggie’s just out there smiling.

“Faith points you to a different life, and he is an opportunity for people to show what they’re really made of.”

But Bibbs said not all people can see past the physical.

“Just recently I was driving along, dropping my nephew off at the bus stop, and I was at a light,” Bibbs said. “I happened to glance over to my left, and I see a car full of guys laughing.

“I was just shocked. I don’t understand why someone would laugh. I can understand if someone is afraid or curious or something like that. But laugh? I just don’t understand that.”

If you see him, he said, don’t laugh, he said. “Just ask.”

Reggie Bibbs

• Age: 42

• Community connection: Member of Second Baptist Church on Woodway

• Fast fact: Bibbs recently received a Gold Addy Award for his advertising campaign encouraging people to “Just Ask”

• Quick Quote: “I thought his T-shirt idea was brilliant. He’s trying to answer a question before the question is even asked” — Lou Congelio, owner of STANANDLOU Advertising, 1001 West Loop South.

Info: For more information: www.reggiebibbs.com , or e-mail reggiereggiebibbs.com

Link to article in chron.com

February 26, 2007 Posted by | ADDY Awards, neurofibromatosis, News | , , , , , | 7 Comments

Neurofibromatosis, Inc.

NF Inc
About UsChapters & FriendsWhat is NF? News & EventsClinical trialsCampNewsletterMake a donationBulletin BoardRelated linksHome

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What is NF?

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births).

NF has two genetically distinct forms: NF-1 and NF-2. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified.

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.

Joseph Merrick, whose condition was depicted in the play and film, The Elephant Man, is often incorrectly thought to have had neurofibromatosis. Merrick’s condition has been identified as Proteus Syndrome, a disorder similar to NF, but unrelated. To learn more about Proteus Syndrome, please visit the Proteus Syndrome Foundation’s website.


  Neurofibromatosis, Inc.
P.O.Box 18246
Minneapolis, MN 55418
Phone: (301) 918-4600
1- 800-942-6825

February 20, 2007 Posted by | neurofibromatosis | , , , | Leave a comment

THE WINNER IS……

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Last night was the 45th Houston Advertising Federation ADDY Awards. It was a terrific! night. I’s a big deal for me. I thank all of my friends that helped make this happen. You know who you are. I wasn’t the only one there. If you were at the event, please let me hear from you.

February 18, 2007 Posted by | ADDY Awards, neurofibromatosis | , , , , , | 8 Comments

ADDYS THIS WEEKEND

The ADDY Awards program will be this weekend. I will be there, with crossed fingers. I hope to be one of the recipients of these great awards. Although I have been lucky enough to attend a few years ago, I still feel a little nervous about the big day. If I don’t win this year, it’s OK. I know I will enjoy myself. I look forward to meeting new people, who I know will become new friends to me. Wish me luck, but don’t say “break a leg.” I only have one good leg. k. Any one have ideas on how to get over the nervousness?

February 15, 2007 Posted by | ADDY Awards, neurofibromatosis | , , , , , | 4 Comments