Thank you for the e-mail MIke forward it to me. How did yo hear about my story? I fist saw you on the O about a year ago when I was flipping thou the TV chs Mike has been trying to help me get my story out. I ws chatting with friend today on yahoo that lives in Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.
I would like your imput on anything that would help make the website better. I wike your store very much it would great to speak to you
We are in the last month of 2008. I’m excited for what we are planning for 2009 and the JUST ASK! campaign. We have just designed a new ad campaign with new photos and messages. The photo shoot was donated by professional photographer and friend, Greg Gorman of Los Angles California.
The new ads will be sent as a public service announcement to a variety of publications throughout the country. Also, we have entered them in the American Advertising Federation award show. The ads will compete with ads from all over the country. This is a great thing to happen, whether we win or not, because our message will be seen from people all over the world. Which means, more people will know about NF. The ads are strong and to the point.
In 2009 I look forward to a bright New Year. We will have a new look. We started with the new t-shirt design. The website will be bright as well. I hope that you will join me in making 2009 brighter. We have the same cause. Awareness of Neurofibromatosis.
The Carolyn Farb Endowed Lecture in Neurofibromatosis,
“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″
Speaker: Roger Packer, M.D.
Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC
Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.
You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks