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Rapamycin Therapy For NF.

The University Of Texas, Health Science Center, is in the process of conducting Rapamycin clinical trials, to treat NF patients with tumors on the body.  I’m happy to say that I’m one of those being treated.  I feel hopeful as well as others members in my family. My mother and sisters are happy to take part in this study.  Second day in the study, and looking forward to what I believe will be a huge step in finding a cure for NF.   I also plan to give updates on any improvements I see on my tumors.

Anyone needing information about taking part in the study, stay tuned. I will have more information on who to contact in Houston, for The Rapamycin Therapy.

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Gaby, my new friend in Germany!

Recently, I shipped a Just Ask t-shirt to Gabriele, a new friend, who lives in Germany. I want to share her message,  But first I want to say, I am impressed that someone from as far as away as Germany took time to write such a nice message and also order a JUST ASK T-SHIRT.  Now!  that is a cool feeling.  Someone supporting what I do to bring awareness to nf.  Gabriele writes…..

“Hello Reggie, I´ve written you a note just a few minutes ago- but before I got the chance to finish it, I hit the “submit-button” by accident. To make shure you receive it all, I´ll start all over again. I´ ve seen a video with you and Oprah on you tube. I found it very touching and think you are very courageous. I was born with NF too and since the right side of my face was damaged I had operations since I was 3 years old. Now I am almost 45 and ´ve been leading a normal live. My parents gave me a lot of courage on my way- thats why NF couldn´t stop me from doing anything. I have to admit that there was no chance for me to become a model but I am a few inches to short anyway 😉 I wish there where more people like you- letting the public know that a face isn´t a vital organ. That people like us have a brain and a heart and   are liveable and loveable beings. One of my reasons to write you was that I wanted to order a “Just Ask” T-shirt. In the meantime I´ve found the link on your homepage. The other reason was that I wanted to tell you “Keep going” … well- there is still so much I would like to say, but I better write a book… A book? Why not…. I hope you had a nice x-mas and want to wish you a happy new year Gaby, from Munich Germany

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2009: The Year in Review. 2010: A New Beginning.

Dear Friends,

2009 was an amazing year!

We are making a difference in the lives of those who are affected by NF.  Every person who reads this blog, every person who watches our videos or looks at our photos on Flickr or who comments on Facebook is telling people with NF that they care.

Our web stats show that we have visitors from every country in the world.  Visitors have viewed our photos over 400,000 times. Our total video views exceed 100,000 views. NF groups around the country are finding out about us and want to be a part. We are being invited to speak at NF functions around the country and Canada. Thanks to our many friends across the web, Just Ask as been asked to speak at the SXSW Interactive conference in Austin in March.

We have visited so many places and made so many new friends that I know will last a lifetime! There are so many wonderful, kind-hearted people out there that I wanted to be sure to mention them and remind them how much I love them. The Houston Roller Derby. The Houston Texan Cheerleaders. All of the cast and crew and visitors at the Texas Renaissance Festival. The belly-dancers at the Houston International Festival. All my dear friends at the Art Car Parade. Steak Nite at PJ’s Sports Bar on West Gray. Music Night at Lou’s. The list is just too long to include everyone!

I am so proud to say that “Just Ask!” is doing just what we hoped for when we created it many years ago, to create awareness of neurofibromatosis by inviting people to just ask about our disease. We accomplish this by going out in public and inviting people to talk with us, to establish a dialogue and letting them know that it’s ok to ask about our bumps and to give a damn.

With the help of friends working behind the scenes, we are able to make this happen. William, Matt, Geo, John, Mark, Bill, Michelle LebLanc and Lou and the rest of the staff at STANANDLOU, Greg Gorman, Scott Dickson, Steve Bass, the Houston Roller Derby, Sugar Ray Leonard, Kevin Nealon…the list goes on and on! Every person who visits the site deserves the credit for making “Just Ask!” an organization that is making a difference. This could not happen without those special friends working as hard as they work everyday.

2010 will also be a great year.  Thank you all for playing such a huge role in the website, blog, Facebook, YouTube, Flickr, Vimeo, Wikipedia and all of our other web resources. Please visit often, tell your friends, and be a part for the great things  that are in store in 2010! Your support and comments are what makes us successful!!! Thank you so much!

Make it a tremendous day,