neurofibromatosis cafe

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

Lou interviews Reggie about the LA trip

p1040773-11. Why did you go to Hollywood? My picture was in Greg Gorman’s book. A friend of Greg’s saw my photo.

Did somebody invite you? The Annenberg Space For Photography invited me out to a private party the evening before the opening.

What did they want to do? It was actually The Inaugural Exhibit. 8 LA Photographers John Baldessari, Carolyn Cole, Greg Gorman. Lauren Greenfield, Douglas Kirkland, Catherine Opie, Tim Street-Porter, Julius Schulman, Lawrence Ho, Kirk McKoy, Genaro Molina. Greg wanted me there to meet some of the photographers.  PHOTOS Continue reading

March 29, 2009 Posted by | neurofibromatosis | , , , , , , , , , | 48 Comments

Reggie in L.A.

3387792827_c17ec5bcc8p1040770-1audrey-wells0759Just talked with Reggie and he had a phenomenal time at the book signing event last night thanks to Greg Gorman. Reggie  said he met a lot of great people and took a lot of photos. He’s  going to try to email me one or two to put on the site until he gets back. PHOTOS

In any event, if you were at the party on Wednesday, please leave a comment so we can live vicariously through Reggie’s amazing life!

Top photo: Me and photographer,

Middle: Me, Christopher Atkins (Blue Lagoon) and Scott Dickson

Lower: Me and Audrey Wells (Director: Under the Tuscan Sun).

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March 26, 2009 Posted by | Appearances, Fun, Greg Gorman, neurofibromatosis | , , , | 22 Comments

TERRIFIC NIGHT AT THE HOUSTON ROLLER DERBY!

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panty raider, scarlett o'hurtya, jeckill & heidi, reggie bibbs, dementia 13, david dementia 13, dirty sanchez

Tonight was the first game for the Houston Roller Derby. season.

It was a great night , and tough bouts in every match.

I have season tickets and, plan to be at every game to support all of my favorite teams as they have supported me.  All of the teams really know how to show love to there fans.  I always feel welcome at the games, and never felt more welcome anywhere else.  Don’t take my word, Just check out the photos.

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It was great seeing old friends again and making new ones.

Dementia, Mistilla, Carmen Geddit and Heidi will always hold a special place in my heart!

To all of the new friends tonight, I appreciate your kind words and I hope to talk to you again.

Maybe next time, we can talk about you!

Thank you. PHOTOS HERE!

Continue reading

March 22, 2009 Posted by | neurofibromatosis | , , , | 26 Comments

Houston Dynamo Cheerleaders Pay Homage to their Leader!

3361123412_24ce8f8943_oI hate it, just because I’m good-looking and have the body of a Greek God, women feel like they can just come up to me and ask for a photo!

Luckily for them, I had a few minutes to spare and tried to make their day.

I was at a Houston Dynamo Kick-Off Luncheon yesterday where the players were introduced and the cheerleaders kind of hung out.

In any event, it  was fun but next time I’m going incognito.

March 17, 2009 Posted by | neurofibromatosis | 34 Comments

“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

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

Need a caption! Win a t-shirt!!!

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March 13, 2009 Posted by | neurofibromatosis | , , | 26 Comments

Am I a fireman yet?

firemanOur friend, Louise Cunningham from Scotland, sent this. I thought I would share it with you here:

In Phoenix , Arizona , a 26-year-old mother stared down at her 6 year old son, who was dying of terminal leukemia.

Although her heart was filled with sadness, she also had a strong feeling of determination. Like any parent, she wanted her son to grow up & fulfill all his dreams. Now that was no longer possible..

The leukemia would see to that. But she still wanted her son’s dream to come true. She took her son’ s hand and asked, ‘Billy, did you ever think about what you wanted to be once you grew up? Did you ever dream and wish what you would do with your life?

“Mommy, I always wanted to be a fireman when I grew up.’

Mom smiled back and said, ‘Let’s see if we can
make your wish come true.’ Continue reading

March 11, 2009 Posted by | neurofibromatosis | 17 Comments

A Meeting With Congresswoman Sheila Jackson Lee!

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I had a terrific meeting with Congresswoman Sheila Jackson Lee this morning!

Joining me at the Mickey Leeland Federal Building in downtown Houston this morning were Drs.Bart Moore and John Slopis from M.D. Andersen Cancer Center; Sandra Parker and her daughter, Emily,  Lou and myself. Sandra is a consumer reviewer for the research integration panel for the Department of Defense. She helps decide which NF research projects get funded based on consumer need and importance.

Congresswomen Jackson took time to meet with us even though she was hard-pressed for time having to fly back to Washington immediately after our meeting. I have to say she was great! She remembered me from a NF function years ago and was genuinely interested in everything we had to say. She seemed quite interested in our story (Emily’s and mine) and after getting all the information she needed,  told us that she would sign the petition to fund research for neurofibromatosis.

Congresswoman Lee also recommended other possible sources of funding that we should be aware of through the government. She will be signing on to keep funding research that will help neurofibromatosis, as well as other types of disorders that could lead to cancer. Everyone should be happy about that has happen today. All of us can benefit from this funding and from the wise support and leadership of Sheila Jackson Lee!         – Reggie

March 9, 2009 Posted by | neurofibromatosis, Research | 16 Comments

Reggie & Lou Go To The Houston Roller Derby, 3/7/09

Mistilla the Killa and Me!

Mistilla the Killa and Me

Me, Dementia & David Norton, the director of my TV PSA.

Me, Dementia & David Norton, the director of my TV PSA.

PHOTOS

March 8, 2009 Posted by | neurofibromatosis | , , , , | 8 Comments