neurofibromatosis cafe

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

A NOTE FROM KEVIN NEALON.

3090342427_26cb9dd5b3_b3090342561_eb020396fa_bThis 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.

December 8, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Benefit, Celebrity, Favorite Places, Friend, Friends, Friends of NF, Fun, Fundraising, Help, Just Ask!, News, nf, NF1, Photos, T-shirt, Texas NF Foundation | 33 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

wee lou makes the decision of her life

Wee Lou “Louise’ Cunningham

On Jul 24, 2008, at 8:39 AM, wee_lou_c wrote:

No unfortunately i had the scan yday and it said the tumor has
grown very large now because of this i would be cut off from the
things i call life also there wud have been a much heavier risk of
me dying straight away today. So i have chosen not to have this but
live slightly longer 2 years at the most and enjoy my family
friends and things i enjoy doing.   I thot my outcome would be so
much brighter but yet again i have to keep fighting to enjoy wat i
have left. Dont be sad.

Wee

Wee, am sad but in a way happy that at least the next two years will
have a quality of life that is better than if  you had the
operation. I wish I was as brave as you, Louise, to calmly say I have
two years left at the most. I wonder if there is a way to get your
records shipped to M.D. Andersen Cancer Center so our NF doctors here
could take a look at them. Are you flying back now or driving?

Lou

July 28, 2008 Posted by | Friends, neurofibromatosis, nf | , , , , | 13 Comments

URGENT!!! NF NEEDS YOUR HELP!!!! Deadline: Wed, April 9!

Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!

Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy! Continue reading

April 7, 2008 Posted by | neurofibromatosis, nf | , , , , , | 67 Comments

Celebrities, artists, designers and friends in middle of doodling frenzy for neurofibromatosis!!!

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g-reggie-bibbs.jpgLou and I are in the middle of what I thought would be a very difficult task: asking celebrities, artists and friends to draw a doodle for National Doodle Day benefiting NF!

Well, I’m happy to say it was very easy thanks to some very special friends! With the help of some special people who want a cure for NF as much as I do, friends from all over the country whipped out their writing instruments and doodled for NF. Some of them you may know like Sugar Ray Leonard. (SEE DOODLE ABOVE LEFT)

Somee-lou-congelio-_1.jpg are friends of my friend, Lou. A big thank you to Lou and all of you who played anf.jpg big part in this effort to Knock Out NF Once and for all. Take time to see all the doodles on my photo page and go the National NF Doodle Day website!

All doodles will be posted shortly onto ebay where you will be able to bid on your favorite NF doodle!!!

Bid high, soon and often and do your part to help raise money for NF.

Doodlers include Sugar Ray Leonard; designer Andy Dearwater; artist/gallery owner Dan Allison, stamp art artist Kim White; printmaking professor Peter Massing, illustrator Matt Loftiss; America’s Greatest Artists, The Art Guys; writers Lou Congelio and Matt Walsh; Lou’s daughter, Elena Congelio; yours truly, Reggie Bibbs; STANANDLOU’s Kate Wiggins and Rhea Diaz; and my nephew, Jordan Walker.

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Continue reading

March 17, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, nf | , , , , , , , | 152 Comments

Rodeo Night With Martina McBride

2319566597_7713960437_o.jpgTonight 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 2319607191_9a1724b37f_o.jpgpeople 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!

March 9, 2008 Posted by | Appearances, Astros Game, Awareness, Friends, houston livestock show and rodeo, Just Ask!, Martina McBride, Music, neurofibromatosis, nf, NF1, NF2, Photos | , , , , , , | 127 Comments

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

wcbbqc_wide.jpgWell, 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? Continue reading

February 27, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friends with NF, Just Ask!, Music, neurofibromatosis, nf, NF1, NF2, RODEO | , , , , , , | 117 Comments

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 Continue reading

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, nf, NF1, Texas NF Foundation, Video | , , , , , , , | 242 Comments

New Facebook Group – “Friends of Neurofibromatosis”

picture-1.pngTo All:

I have created a group on Facebook called “Friends of Neurofibromatosis.”

To those of you unfamiliar with Facebook, it is a FREE website that allows you to do a lot of things like post photos, videos, and friend links, much like MySpace, but with one very important difference. It allows members to form groups of like-minded people who share special interests and allow them to easily interact with each other.

I can’t think of a more perfect tool to use in building a community of people who are challenged by neurofibromatosis in one way or another than this. Whether you have NF, have a friend or family member with NF, or are just interested in helping people with NF, this is the website for you.

By becoming a member of this group, you will be able to connect with other people who share the same frustrations, burdens and pain of NF. You can pass along information that you think might be helpful to others. We can send time-sensitive newsletters to ALL group members with a click of a button when an important event or news item occurs.

Facebook will never replace this blog but it will provide us the means to meet new people, build awareness, share information, and, most importantly, help us build a community that helps provide comfort, education, distractions and support to all affected by NF.

Please check out the group at this link and if you can see the endless possibilities that this site provides, please join!

I thank you! —Lou http://www.facebook.com/group.php?gid=21960217912

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Community, Facebook, Friends of NF, Help, neurofibromatosis, nf, Texas NF Foundation | , , , , , | 153 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

Texans vs Saints, 11/18/07! WE WON!!!

2044702675_30b800811d.jpgLou and I went to the game today. We won although I don’t think Lou realized there was even a game being played. He was too busy checking out the cheerleaders!

Here is a link to all the photos.

November 18, 2007 Posted by | Awareness, Houston Texans, neurofibromatosis, nf | , , , , | 38 Comments

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

1832058392_4cc394534e.jpgThat’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

November 2, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, Just Ask!, neurofibromatosis, News, nf, NF in the News, PR | , , , , , , | 149 Comments

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

google_logo1.jpgReggie 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!!!

September 6, 2007 Posted by | Awareness, Links, neurofibromatosis, News, nf | , , , , | 7 Comments

REGGIE VERSUS ADGIANT

HOLD STILL

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.

August 29, 2007 Posted by | Adgiant, Friends, Fun, Just Ask!, neurofibromatosis, nf, NF1 | , , , , , , , | 105 Comments

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

pictures-of-graduation-and-austin024.jpgI 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. Continue reading

August 26, 2007 Posted by | Awareness, neurofibromatosis, nf, NF1, NF2 | , , , | 97 Comments

FORTH WORTH MAYOR MIKE MONCRIEF

376702630_0e7ac2eb0e_o.jpgI 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:

Mike & Rosie Moncrief, Mayor and Mrs. Mayor of Fort Worth

“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

July 1, 2007 Posted by | Appearances, Awareness, Friend, Friends, Fun, Fundraising, Help, Just Ask!, neurofibromatosis, News, nf, NF1, Photos, T-shirt | 4 Comments

4TH OF JULY CELEBRATION

neurofibromatosisHello 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.

June 30, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Friend, Friends, Fun, Just Ask!, neurofibromatosis, nf, NF1, Photos, Some People, T-shirt | 8 Comments

MY NEW FRIENDS IN THE UK.

i183123312_96166_4.jpgI’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

June 29, 2007 Posted by | About Me, Astros Game, Awareness, Friend, Friends, Fun, Fundraising, Help, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Video | 1 Comment

“JUST ASK!” IS OFFICIAL

656515238_bdfd0d2b77.jpgToday 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!” Continue reading

June 28, 2007 Posted by | About Me, Appearances, Awareness, Fundraising, neurofibromatosis, nf, NF1 | 10 Comments

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

thecheck6.jpgToday 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.

June 21, 2007 Posted by | Awareness, CTF.ORG, Friend, Friends, Fundraising, http://www.ctf.org, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Photos, Research, Texas NF Foundation | 5 Comments

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 . Continue reading

June 19, 2007 Posted by | A MESSAGE FROM REGGIE, Appearances, Awareness, Friend, Friends, Links, Medical, neurofibromatosis, News, nf, NF1, Some People | 5 Comments

TASTE OF TEXAS FUN

p1010076.jpgPeople 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!

June 16, 2007 Posted by | About Me, Appearances, Awareness, DESSERTS, Favorite Places, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Photos, Restaurant, T-shirt | 8 Comments

HOPEFUL NEWS IN NF RESEARCH

NZ bee compound gives tumours the buzz-off

By Martin Johnston

Bees collect propolis to seal their hives.

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. Continue reading

June 14, 2007 Posted by | Appearances, Awareness, Medical, neurofibromatosis, News, nf, NF1, Research | 4 Comments

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.

June 13, 2007 Posted by | About Me, Appearances, Awareness, Friends, Fun, neurofibromatosis, News, nf, Some People, Texas NF Foundation | 8 Comments

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. Continue reading

June 10, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Friend, Friends, neurofibromatosis, News, nf, NF1, Some People, Texas NF Foundation | 13 Comments

ADDY AWARDS

awards2.jpgI 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.

June 6, 2007 Posted by | About Me, ADDY Awards, Awareness, Fun, Fundraising, neurofibromatosis, nf, NF1 | 3 Comments

REGGIE’S HOBBIES (COOKING AND BAKING)

p1010016.jpgpatotoes BAKED BEANS 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.

June 4, 2007 Posted by | About Me, DESSERTS, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Photos | 2 Comments

MEETING OTTMAR LIEBERT

ottmar.jpgOttmar Liebert is one of the best flamenco guitar performers around. A friend of mine, Greg Gorman, made it possible for me to be to at one of Ottmar’s performances at Rockerfeller’s in Houston. Mom and I had a terrific time. After the performance Ottmar was nice enough to take time to talk with me and take photos. He even signed one of his CD’s for me. If you like the flamenco guitar or New Age type music, you will enjoy Ottmar’s music. I have a link to his site as well as my friend Greg Gorman. I am happy to call both of them my friends.

May 30, 2007 Posted by | About Me, Appearances, Friend, Friends, Fun, Links, Music, neurofibromatosis, nf, NF1, Photos | , , , , , | Leave a comment

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