Neurofibromatosis Cafe A place to talk, have fun and share.

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Lou and I went to the rodeo tonight and had an incredible night! The highlight of the evening happened rather early like within the first 15 minutes. Lou noticed a nice lady next to us with a baby and she looked like she needed to smile. So Lou started talking with her and before I know it, she’s asks me if I want to hold her baby. I was so honored and so proud and so appreciative of the unconditional trust that she had in me.

Michelle Hickman, you made my day today! Thank you so very much!

Lou took…like, over 120 photos so click below to see all of the new friends we made tonight. And, also, a special “Thank you!” to the soldiers from Fort Hood that were at the rodeo tonight. You are a credit to our nation!

I salute you!

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A few months back, you may remember the blog asking for your vote so that I could be one of the speakers at  SXSW.  Well, your vote worked because I will be one of the speakers this weekend.  Lou and I head out to Austin Saturday to check in and scope out the place.  Then, on Sunday around noon, I will share with the panel how I utilized the internet via my website, blog, and Flickr, YouTube and other resources on the internet to spread awareness of neurofibromatosis. It would be great to see you there.  All the information you need, if you would like to attend, is here. Look forward to seeing you. If you live in Austin, definitely send me a message!

By the way, I did NOT write the title of the panel!

Received this yesterday:

Hi Lou,
My name is Patty Hall and I’m a research director recruiting people with NF1 for a double blind, placebo based study investigating certain nutrients in the treatment of symptoms of NF1. Attached is a copy of the protocol for your consideration as a post.  I need sixty patients and the study is of no cost to participants.

Neuropathy Solutions is currently seeking 60 patients with Neurofibromatosis 1 to participate in a double blind, placebo-based study investigating the use of nutrients in the treatment of symptoms related to NF1. Study participants should be:
1. Ages 13 and older.
2. Have a diagnosis of NF 1 based on NIH criteria with two of more of the following characteristics.
a. Six or more café-au-lait macules
b. Skin fold freckling of the axilla and groin
c. Optic pathway glimoa
d. Two of more Lisch Nodules of the iris
e. Distinctive bony lesions such as dysplasia of the sphenoid wing or the long bone of the tibia.
f. Two or more neurofibromas of any type or one or more plexiform neurofibroma
g. First degree relative with NF1
3. At least four subcutaneous neurofibromas on skin exam with the following qualities; the lesion must be discrete by clinical exam and amenable to measurement with calipers with a minimum dimension of 5mm and a maximum of 20 mm.

Patients will be supplied all study supplement and receive follow up consultations for a period of six months free of charge. If interested, please call Patty Hall at (616) 826-4033 or email her at patty@terraceuticals.com.

Patty Hall, Research Director, Neuropathy Solutions

I got the surprise of my life today. Well it shouldn’t have surprised me. Sugar Ray has always been a supporter of my work in JUST ASK.  Sugar Ray wrote me.  He said, he needs a new Just Ask t-shirt, so he can continue to wear my shirt and help spread awareness of neurofibromatosis when he travels to other countries.  This is great to have someone as famous as Sugar Ray Leonard to be involved with making a difference in the  JUST ASK! campaign.  Sugar Ray always ends his notes by calling me the Champ. Sugar Ray is the real Champ!

Thank you Sugar Ray.

Reggie Bibbs, don't know name but real nice, Lolly, the best waitress and person in the world, and I don't know this guys name either but will get it next time. What a great place, they made me feel very welcome!

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.

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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 kbischoff@nfinc.org

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.

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