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

The Group made it to Washington, DC last week which was a task in itself with  the winter storm hitting the east cost.  The storm was gone, but there was still a lot of snow.  Living in Houston, all my life. I have never seen that amount of snow in one place. Most of it was cleared away. It was enjoyable though.

The Neurofibromatosis Coalition team made all of the meetings. I believe all of the meetings went well. The amount requested  is $25 million. The same amount requested last year.  We were shaved down to 13 million.  The Department of Defense (DOD) could have easily awarded more funding for studies, if the funding was awarded.   The good news is there are studies that are waiting in line that could help.  Write your local and State Representatives and let them know how important funding is…it will save lives for millions of Americans by finding a cure for all types of cancer.

PHOTOS

(Double-click on photo above for the names of our Just Ask! ambassadors)

See all the photos on Facebook

See all the photos on Flickr

If you were at Camp for All this weekend, please leave a comment below and your full name so that we can tag your name to the photos on Facebook and Flickr. Also, a brief description of yourself or where you are in one of the photos. Or, better yet, go to Facebook or Flickr photos and tag yourself or leave a comment saying that you are in that photo so we can get to know each other better and connect faces with names.

Unfortunately, we met so many new people this weekend that we can’t remember all of the names. Either that or we were too drunk! Just kidding….

Reggie Bibbs.

This year Camp For All, was  more then words can discribe.    Thank goodness for the rain, yes a rainy camp weekend.  We had a great time.  No there was no mud wrestling, all though all of the ellemants was there to have a few matches. We discided to meet our new commers to camp this year.  It was nice meeting friends that I talk to on  FaceBook,  and finnally meeting them at camp. Also It was nice meting our friends who we see every year was a blast as well.  Plese new commers join in the blog and talk about camp.   Remember to tag your photos on facebook so everyone will know who you are. Maybe we can encourage more to join us next year.  Thanks for making Camp a time to remember. And, thank you Texas NF Foundation for making this all possible!!!

Friends 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. (more…)

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

To 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.

Two 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.

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!

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

(more…)

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 (more…)

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!!!

I’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.

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!