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.
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!
A 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.
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.
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
Send an NF patient to NF Family Camp
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.