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

Here is a link to past your draft letter

DRAFT Senate Support Letter

Dear friends,

I received this support letter template via email from our neurofibromatosis lobbyist in Washington, D.C. She asks that we distribute this letter to all our friends of NF so they can sent it to their congressperson in D.C. This letter is the result of our meetings earlier this year when I went to talk with the senators and Army people to continue funding for NF research. This is very important and I know everyone with NF will want to help. Thank you.

Reggie

Okay, this will remove the last barrier to 100 percent compliance with Sir Reggie’s command. Here is a website with names and addresses of all 100 Senators. http://www.senate.gov/general/contact_information/senators_cfm.cfm – Bart Moore

The Honorable (Senator’s Name)

(Office Address)

Washington, DC 20510

Dear Senator (Name):

As someone closely touched by Neurofibromatosis (NF), I write to request your support for the Army’s Neurofibromatosis Research Program in the Fiscal 2010 Department of Defense Appropriations bill. The House of Representatives included $25 million for NF research as part of the Congressionally Directed Medical Research Program (CDMRP) for FY2010, and I write to encourage the Senate to also include $25 million for this program when the FY2010 Defense Appropriations bill is considered. Significant advances in NF research have been made, due in large part to the Army’s program, and leading researchers are now on the threshold of a treatment and a cure for this terrible disease. (more…)

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…)

How can I begin to tell you how much fun I had yesterday at the International Festival. The day stated out very well with meeting people who have seen me before. There where happy to take photos with me. I was remembered from last year. The food was terrific music was great. All types of music. I enjoyed the country music of course.

The best part of the evening was music from the Neville Brothers. Arron Neville. I actually got to meet the Neville brothers. A very big thank you to the Neville brothers for taking time to meet and take photos with me. Also thanks to my friends who joined us, Matt Jones, “The Tall One” and William Hughes, “The Smart One.” I said man I would love to meet the Neville brothers. Matt said, “I bet I could make that happen.” Well, he did and you see the photos as proof. I have to tell all of you I had the best time ever.

SEE PHOTOS OF CONCERT AND BACKSTAGE

It would be a really good thing if we could get a group together and do what I have been doing for a year. I can promise you it will change how people feel about NF, and you will feel better that you did it. Whether you have nf1 or nf2, it is a great thing to let people get to know who we are. I would really like my friend, Brian, to go with me some time. I really think people are more understanding now. It seems to me that people expect me to be there. How cool is that?!! Next stop, the “Art Car Parade!”

Wow! Tonight I was invited to the Rodeo once again. It was a more then Terrific night. The music was the best I’ve heard so far. Clay Walker sang all of my favorite songs and encouraged everyone to join in. Pretty cool. It was cool to see him ride a horse to the stage. A real Texan.

A big thank you to Laurie Selzer, from MNI (Media Networks Inc) for allowing me to join them in the Verizon West VIP suite. The food was terrific. I wish I knew everyones name I would love to say thank you for the wonderful treatment.

Here are a bunch of photos I took tonight. I hope to add everyone’s names to these when Lou gets them from Laurie!

Tonight was another great night at the Houston Livestock Show and Rodeo!

I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.

Click here to see photos from today!

I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.

I know why she loves Houston. I feel it every time I go out. So many people here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!

Meet Kay from the U.K. (full interview)

WellChild meets a young girl called Kay, who has a condition called neurofibromatosis otherwise known as NF1.

Children’s health videos from WellChild. Information, advise and stories about children from the UK children’s charity. Registered charity number 289600.

WellChild produces a range of videos spanning children’s health. WellChild is the single point of reference for all children’s health, for children and families.

“Hi, My name is Camrin, at 15 years of age I was diagnosed with neurofibromatosis type 1. Neurofibromatosis is small tumors on your head or other areas of the body. Some of the symptoms might be brown spots throughout your entire body similar to birth marks. After the doctor diagnosed me with that I also had anxiety problems. I was than put on medicine called paxil. The teachers new that I was on it and they used to ask me if I took it or not. Sometimes, I would say yes and other times I would say no. I didnt like being on anxiety medicine because it made me feel so stupid.” white_lilies2445

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