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

It’s back!

Hot, sweaty roller derby action is back at Kicks and Lou and I are going this Saturday! Sure will miss some of the skaters that retired last year but look forward to meeting the new skaters who are taking their place.

I love Houston Roller Derby! The women who skate are tough on the outside but are the sweetest, most wonderful people on the inside. Every time I go, they make me feel like I’m the most important person in the world!

Lou and I went to the rodeo tonight and had an incredible night! The highlight of the evening happened rather early like within the first 15 minutes. Lou noticed a nice lady next to us with a baby and she looked like she needed to smile. So Lou started talking with her and before I know it, she’s asks me if I want to hold her baby. I was so honored and so proud and so appreciative of the unconditional trust that she had in me.

Michelle Hickman, you made my day today! Thank you so very much!

Lou took…like, over 120 photos so click below to see all of the new friends we made tonight. And, also, a special “Thank you!” to the soldiers from Fort Hood that were at the rodeo tonight. You are a credit to our nation!

I salute you!

PHOTOS

It is that time of year again. The Texas NF Foundation, is making it possible for nearly 200 persons to have a great weekend at Camp For All. This weekend will be our yearly camp for persons with nf, along with family and friends. The one time most of us get to see each other. I’m looking forward to horse back riding, Zip line, which I hear is lots of fun. Fishing, petting zoo, and Lots of talking with new and old friends. Also looking forward to sharing with you photos to all who can’t make it to camp this year. Let’s talk about camp this week. What do you look forward to this weekend at Camp For All.

Reggie,

there I was, back in my home town for the PA HOG Rally.  Nothing to do with farm animals, HOG stands for Harley Owner’s Group.  The rally was a bit of a let down, compared to some we have attended over the years, but being back home was great.

Thought you might want to see my small effort to get the word out in Western PA.

Your friend,
Ed Olsavicky

Photos

Lou’s vacation photos from Houston to New Orleans to Memphis TN to Nashville TN to Cincinatti OH to Youngstown OH to Franklin PA to Cleveland OH to Knoxville TB to Tuscaloosa Alabama to New Orleans to Houston

This is a blog that all School Students will want to comment on, as well as parents. It is that lovely time of year again. YES! School is out for the summer. woo hoo.  Lets talk about some of the fun things we can suggest for those who don’t have a clue of what to do for the little ones who have all this time to spend at home. And for those of us who have nieces and nephews that want something fun to do, post it here.  Something that will keep them busy and the uncle happy because they are happy having so much fun.  See then everyone is happy all summer long.

Just 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).

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 thought I would share with you about Last Saturday. I had lunch with a friend, Ed Olsavicky.  Ed is a terrific friend and a relative of Lou’s. I met Ed at Lou’s wedding many years ago.

While Ed was in town this Thanksgiving holiday, he wanted to get some good old Texas Bar-B-Q. Lou took us to Goode Company where we had a great lunch. Ed wanted to know everything about JUST ASK, and how things are going at my office. It was great talking to Ed and catching up on things since I saw him last.

I hope you enjoy the photo. He now has a Just Ask! t-shirt and will be talking aboutf Just Ask and neurofibromatosis when he gets back to Pennsylvania. Thanks ED for the lunch. See you in D.C.!

MORE PHOTOS HERE