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

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

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.

It is that time of year again. The Texas NF Foundation, is making it possible for nearly 200 persons to have a great weekend at Camp For All. This weekend will be our yearly camp for persons with nf, along with family and friends. The one time most of us get to see each other. I’m looking forward to horse back riding, Zip line, which I hear is lots of fun. Fishing, petting zoo, and Lots of talking with new and old friends. Also looking forward to sharing with you photos to all who can’t make it to camp this year. Let’s talk about camp this week. What do you look forward to this weekend at Camp For All.

Texas has been lobbying since 1997 to ensure that NF research continues to make progress. Since that time, over 200 million has been contributed to NF research programs. Within the last few years, research funds have steadily been decreasing. However, today I am proud to announce that they are “back up!” The House Appropriations Committee just ruled that another 25 million will go towards the 2010 Department of Defense NF Research program. This is a tremendous victory since last years projects only collected 10 million. That’s a 250% increase!
Thanks to all of you for writing your Representatives, It worked! And thanks to Reggie Bibbs, Sandra and Emily Parker, Dr. Slopis and Dr. Moore for taking the time to personally visit Representative Sheila Jackson Lee.
HOWEVER – The 25 MILLION IS NOT SECURED – YET. We still need YOUR HELP to SECURE THESE FUNDS! Please email, or better yet, hand write and fax a personal letter asking that our Senate approve the House Appropriations proposal of 25 million towards NF research. Thanks again, together we are making a difference!

Senator John Cornyn FAX: (202) 228 – 2856
Compose an online letter to Sen. Cornyn
Senator Kay Bailey Hutchison FAX: (202) 224-0776
Compose an online letter to Sen. Hutchison

Another nite at Lou’s.  Last night steak nite,  became Music and Pizza nite.  It was quite different from our regular Thursday nite.  All of the guy’s though it would be a good idea to work on our  music and eat pizza.  Mark Sansoucy new to the Reggie Bibbs Orchestra, alone with the regulars William Hughes,Matt Jones, and Supporters Geo Austin  and Lou Congelio.  Our friend  wrote a song that  we loved. Mark was  inspired by JUST ASK, to write a song. The name of the song?   JUST ASK. You will enjoy it as much as I do, I’m sure of that. We hope to have the photos and videos  on the blog soon.  I would love to hear your thoughts on the idea. And I know I can look forward to terrific comments of the music.

Download Lyrics to “Just Ask!”

Watch the video.

Just Ask (A Song for Reggie Bibbs)
Music and Lyrics by Mark Sansoucy

Just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

I see people staring at me in restaurants
When I’m hanging out with my good friends
Yes, they see the way I look
And they get a little spooked
But that’s because they don’t know what I have

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Pull your chair on up and come on over
I don’t bite, but sometimes my friends do.
Yes, we like to clown around
When we hit the town
But just like you they stepped on up and asked

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Living a life like mine it isn’t easy
Sometimes I don’t want to leave my house
But I can’t live in fear
For those who hold me dear
Cause they know it’s what’s inside that really counts

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello
All you have to do is say Hello

This is a blog that all School Students will want to comment on, as well as parents. It is that lovely time of year again. YES! School is out for the summer. woo hoo.  Lets talk about some of the fun things we can suggest for those who don’t have a clue of what to do for the little ones who have all this time to spend at home. And for those of us who have nieces and nephews that want something fun to do, post it here.  Something that will keep them busy and the uncle happy because they are happy having so much fun.  See then everyone is happy all summer long.

From: Ed Port <gbg@ameritech.net>
Date: December 27, 2008 2:56:15 AM CST
To: reggie@reggiebibbs.com
Subject: Hello Reggie from Ed Port
Reply-To: gbg@ameritech.net

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

http://www.edneedsamiracle.com/

Ed Port

Youngstown Ohio (more…)

Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

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

Reggie

This weekend I got the shock and surprise of my life! I was going through my emails looking for a phone number when I came across an unopened email dated November 14! It was from my new friend Kevin Nealon, from Saturday Night Live, who I had just met the night before.

I have no idea how I missed this very important email but I guess it was because I was traveling and wasn’t able to check email till I got back home. Anyway, here is the very nice email that Kevin wrote plus the photos he sent.

Hey Reggie,
So great meeting you last night, and your friends! I’m so
flattered that you guys came to my show. Oh, loved your website, too!!
Susan and I loved checking out each category. Great videos and pics,
great coverage on the news stations as well. We’re so impressed with
your courage and your raising awareness of NF. What a difference you
are making! Please keep us updated on the foundation.

Attached are a few pictures of me wearing your shirt. Btw, it
fits me like a glove. I have a new cause now.

Best wishes,
Kevin and Susan

Most of you have seen the photos from my trip to Manhattan Beach California, when I went to visit my friend, Scott. Well, on the visit, Scott suggested we go see Kevin Nealon at the Comedy club. That is where it all happened. After the show Kevin came over to meet me. It was there when I shared with Kevin and his Wife Susan about NF. What a nice couple they both are. So kind and understanding to NF, and the JUST ASK campaign. I’m proud that Kevin is wearing one of my JUST ASK! T-shirts. You never know where you may see one next. Thank you Kevin and Susan for your support. Hope to see you soon.

The Texas Renaissance Festival this weekend sounds like a terrific idea. I plan to be there Saturday to join in the fun. This will make my second year to attend.  Last year was a blast and I’m sure this weekend will be just as fun as last year. See the link for more on the Festival.  If you enjoy things like games food music then you will enjoy the Renaissance Festival.  I will be there hope to see you.   See the link for more information.