Today, Steve Bass (PHOTO ON LEFT) and I will be traveling to British Columbia, for the NF Canada and BCNF symposium. Steve Bass is the owner of srbservices. and  someone who has been a very good friend, is taking time from is business to help me with my travels. This a tremendous help to me when Steve can juggle things around to make things easy for me.   All of this at his own expense, to help a friend, and the Just Ask Campaign.

The Symposium promises to be exciting. Looking forward to seeing my good friend Dr. Riccardi!  Yes, he will be there, and I will have a tough act to follow. I have to speak after Dr.Riccardi (PHOTO TO THE RIGHT).  Not too worried about it. He refers to me as the secret weapon for nf.  Wow, that means a lot coming from someone like Dr. Riccardi.  Stay tuned as we hope to send photos as we get them.

I need to bring Dr. Riccardi a new gold Just Ask! shirt. It would look great with his tan! I mean just look how good it looks on me!!!

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"Just Ask!" Goes to Antartica

A friend of mine, Chad Leathers sports his Just Ask! shirt in Antarctica for a race4 research. nf. Chad and I have been friends for abut a year. He has a great story. If you enjoy good music and concerts follow the link. Tumorators. Chad has  projects going on to help fight for

a cure for nf.  Please visit his page to learn more as to how you can attend one of his concerts. I know I plan to make a surprise visit.  But don’t tell Chad. I want it to surprise him.  Thank you Chad for spreading awareness by wearing  my just ask shirt.

About The Tumornators

The Tumornators is a fundraising team started by the Leathers/Cone family in conjunction with the Children’s Tumor Foundation that is dedicated to raising money and awareness to end. Neurofibromatosis (NF) and Schwannomatosis through research.

On Christmas Eve 2006 while driving back to Georgia from one of Drew’s many surgeries at Johns Hopkins Hospital, the family decided to take a more active role in Drew’s illness. The foundation was born February 2007 when they put together a compelling slideshow telling Drew’s story that, accompanied by a heartfelt song written by Drew’s brother, Ben, appeared on the newly-formed web site.

Thanks to the generosity of people like you, the grassroots campaign has raised over $100,000 to date through fundraisers, donations and with the help of friends like Atlanta Braves right fielder Jeff Francoeur and former NFL player Matt Stinchcomb and New Orleans Saint, Jon Stinchcomb.

All funds raised are donated directly to the Children’s Tumor Foundation so that Drew and others like him can live a life free of the devastating impact of tumors.

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.

I spoke with Mari Garcia administrator of Gillian Anderson’s Official Web Site, I was asked sometime ago to help out and to contribute a doodle for NF, Inc’s Second National Doodle Day Auction. I was happy to post a blog and do what I can to be of help. Please check out the links and see your favorite Actors and actress and others who have support the fight against NF.

The auction will start on May 8 on eBay. So far there are two pages and more doodles will be added as they come in. Be sure and blog your favorite doodle.

NF, Inc. is raising money for neurofibromatosis through their annual National Doodle Day! As part of NF Awareness month, celebrity doodles will be available for auction on eBay.

These doodles have a very important aim: the funds they raise will benefit NF, Inc., an organization dedicated to providing support to individuals and families affected by neurofibromatosis (NF).

Neurofibromatosis is a genetic disorder that affects one in every 2,500 births. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined. Funds raised from the Doodle Day auction will go to support education, advocacy, coalitions, and research for treatments and a cure.

To learn more about NF, please visit www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

To all my friends who are reading this blog, I’d like to introduce you to my “Friends of Neurofibromatosis” group on Face Book. We have quite a few members now, over 70. I am now in contact with a few good friends that I had lost contact with from the 1980s. My friend Dr. Vincent “Vic” Riccardi is now part of our “Friends of Neurofibromatosis” group. I’m sure anyone who has NF may know him or have heard of him. Dr. Riccardi is a legend when it comes to neurofibromatosis research and treatment. He has not only been a good doctor, but a good friend. He has done a lot for NF. At one time he was on the Board of the Texas Neurofibromatosis Foundation. He was its Medical Director for many years helping decide where to give the money we raised for research. Hopefully, maybe we could get him to come to the blog from time to time.

Two other friends have showed up too! Megan Phillips and Andy Ganster are now online with us. Megan, Andy and I shot some TV commercials with Lou back in 1989. That’s when we first met Lou through Bob Hopkins, then the TNF Executive Director. Those were some pretty serious commercials but they helped neurofibromatosis get some much needed awareness.

I hope anyone visiting this blog will also join us on Facebook as well. We will all learn as we go alone on Facebook. The games and quizzes are fun and challenge. It a good way to find friend you may have lost contact with. Believe me, I know!

Here is the link!

To All:

I have created a group on Facebook called “Friends of Neurofibromatosis.”

To those of you unfamiliar with Facebook, it is a FREE website that allows you to do a lot of things like post photos, videos, and friend links, much like MySpace, but with one very important difference. It allows members to form groups of like-minded people who share special interests and allow them to easily interact with each other.

I can’t think of a more perfect tool to use in building a community of people who are challenged by neurofibromatosis in one way or another than this. Whether you have NF, have a friend or family member with NF, or are just interested in helping people with NF, this is the website for you.

By becoming a member of this group, you will be able to connect with other people who share the same frustrations, burdens and pain of NF. You can pass along information that you think might be helpful to others. We can send time-sensitive newsletters to ALL group members with a click of a button when an important event or news item occurs.

Facebook will never replace this blog but it will provide us the means to meet new people, build awareness, share information, and, most importantly, help us build a community that helps provide comfort, education, distractions and support to all affected by NF.

Please check out the group at this link and if you can see the endless possibilities that this site provides, please join!

I thank you! —Lou http://www.facebook.com/group.php?gid=21960217912