Something happen today, Something I never expect. Lou, my friend called me on my cell phone. Lou took me to lunch. Seem like ages, sense we spent as much time as we did today. With Lou, being swamped with work in all, it hasn’t been time for a visit. I’m very happy it happen. It was nice to hear about the projects Lou has been working on. And I was happy to talk to Lou about my work as well. Never thought, the two of us would get too busy to keep up with each other. Job security is what I call it.
Everyone was really nice at the Spanish Flowers, where we had lunch, and I enjoyed the friendly smiles. I place, I would choose to dine any day. A big thank you to Lolly and the staff. Thank you for the photo opt as well.
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.
Hello, everyone! Well, it’s that time of year again. This Sunday I will be joining NF, Inc. in Washington, DC to represent individuals affected by NF and advocate for continued and increased federal funding of NF Research. A delegation of NF representatives from organizations across the country, will be visiting our Representatives and Senators. They will receive a packet of information describing our requests, and we would like to include personal stories from those who live with NF. We encourage you to send your personal story about how NF impacts you or your family, and how important federally funded research is to you. All stories will be hand delivered in Washington. Please include your name and address on your letter, and fax your letter to (630) 627-1117 or email to [email protected]