Reggie Bibbs First Ever Astros Game!!!WOW!!!!!!!

What can I say but WOW!!!!!

I have always wanted to watch the Astros in person but was always afraid to be in crowds among people I thought would be afraid of me or not want to be around me. I WAS SO WRONG!!! I had the best time of my life!!!! I felt like I was surrounded by friends and I have to tell you, that doesn’t happen very often.

Thank you, all of you who came up to me and said hello and took pictures with me. You have no idea what that simple act of kindness meant to me.

It was the greatest day of my life!

I want to send an extra special thank you to Amanda Ludeke, on-air personality at Sports Radio 610. Thank you for introducing yourself to me. Thank you for making me feel so special.

And thank you Jay Sitta of CBS Outdoor for the incredible tickets!!! You guys rule!

CLICK HERE TO VIEW ALL THE PHOTOS!!!

Welcome to Minute Maid Park!

CLICK HERE TO VIEW ALL THE PHOTOS!!!

Thank you to all the new friends we made today at Minute Maid Park!!! What a Tremendous Day!!! Thank you all who came up and introduced yourself to me! You really made my day!!! Continue reading

Do you think the Heritage Building makes me look fat?Hi Everyone,If you are visiting this blog for the first time, welcome!

The purpose of this blog is to serve as a meeting place for people who have NF, or who knows somebody with NF or is just interested in learning more about NF. But no matter how we are connected to NF or this blog, I know we all share the same goal: to find a cure. Continue reading

My Friends at Fiesta!Here are a few friends from one of the grocery story I love to shop, Fiesta. Everyone here is really nice. I ‘m here with the managers of the store, Curtis and Linda. It’s at South Main and Post Oak.

If you live in the area of this store, please stop and say hello to these nice people. Let they them know they are making a difference in the community they serve.

It’s sometimes very difficult going to new place where people don’t know you or are unfamiliar with neurofibromatosis. Nice people like Curtis and Linda make it very, very easy to live a “normal” life. They give me the courage and confidence to reach out to others about neurofibromatosis.

nfauk-logo.gifReggie,

I just wanted to drop you a line and say how great you are! I have NF1 too and although it’s not too severe other members of my family have it pretty bad. Having the disease isn’t fun and the tumors cause a lot of pain. It doesn’t help that doctors over here in the UK know so little about it, I feel I’m teaching them sometimes! It’s put me off having children so I think I’ll stick to dogs!
I saw your video on You Tube and had a look at your website. It’s very cool and I loved the photos too. You have a gorgeous family and a good group of friends.
If one thing NF has taught me it’s never to judge anyone on the way they look and I get so mad when I see it happen on the tv or in the street. Anyway, congratulations on all that you have achieved and for making people more aware. You are an inspiration!

 

Best wishes,

Kim

ctf-logo-bb.jpgA friend sent me this link and I was blown away!!! They’re talking about me and my website. Here’s the link to the discussion group. I’m going to respond to their questions today! Maybe you can join me and help me out. Please?!! The Children’s Tumor Foundation is one of the leading organizations in the world involved in neurofibromatosis research and treatment.

http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=1;t=008133

reggiebw.jpgHey Reggie!

You’re doing awesome work brother. I was diagnosed with NF from birth and I’m very thankful for what you’re doing. I always felt like I was alone until a few years ago I’ve found some really awesome NF friends. (one of which shared your video and site with me) Congrats on your awards. I plan on buying one of your shirts when they go for sale.

Jeremy

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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

hyderabad_gifts_cakes_blackforest2.gif mmmm cake hyderabad_gifts_cakes_blackforest2.gif

Ok, Here is one for you. I am a lover of all desserts. Cakes Pies Cobblers, and the list goes on. My question is what is the highest amount you would pay for a specially ordered dessert? How much is too much? Whether it ‘s for yourself or someone else. One time, it was years ago, on my 18th birthday I bought myself a birthday cake. It cost me $75. At that time it was a lot of money. The cake above I can handle alone.

p1010002.jpgp1010001.jpgI had a TERRIFIC! day. I went to where my brother Byron is employed, Macks Transmission. I had a chance to talk to Byron for a short time. My visit was with my friend Jerry T, who works in one of the offices. Cool guy. Here I’m posting the photos of my friends that bought shirts today. But that’s not all. I also saw my doctor at MD Anderson.

Dr. Diwakar Balachandran has been very supportive of my work with nf awareness. Thank you Dr. Balachandran and Jerry!!!