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 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.

PHOTOS

Great news, everyone! We just found out that Reggie has been accepted to speak at the SXSW!! Thank you, EVERYONE, for your online votong and great support, especially Jason McElweenie who started this whole thing!!! Way to go, Jason!

Here is the page that lists Reggie’s topic http://sxsw.com/interactive/talks/panels Here’s what they sent us:

Dear Reggie Bibbs,

Greetings and congratulations!

This e-mail pertains to this proposal that you submitted to the SXSW PanelPicker:

“Becoming An Inspiration – One Pixel At A Time”

PLEASE READ THIS ENTIRE E-MAIL CAREFULLY BEFORE YOU TWEET, ETC

We really like your proposal — and it scored well with the general public voting as well as with the Advisory Board. To this end, we would like this to be a “Core Conversation” at the 2010 event. We received more than than 2300 outstanding proposals via the SXSW PanelPicker — so being selected for the event means that your idea represents the best of the best of the best. Congrats!! And, thanks again for putting together such a great proposal.

To your most basic question . .. what is a Core Conversation? We started doing these in 2008 and they have proven to be immensely popular with SXSW attendees. Core Conversations occur in slightly smaller rooms than do panels. Moreover, these sessions involve a lot more interactivity than the more traditional panel format. So, if the traditional panel format involves presenting an expert’s information to the audience, then the Core Conversation involves leading the audience in a discussion on the topic at hand. Given this is a discussion, Core Conversation rooms do NOT include AV equipment such as a computer or a projection screen — these sessions are creative people sharing their ideas with other creative people, as opposed to passively watching a presentation. We repeat — Core Conversation rooms do NOT include AV equipment.

We look forward to receiving your reply / confirmation as soon as possible. If you do not confirm before 1:00 pm CST on Monday, November 30, then your proposal probably won’t make it onto the web post for Tuesday, December 1.

After we receive your reply / confirmation, we will begin the process of sending you lots and lots more information about your speaking slot at SXSW.

As for questions, we know that you probably have tons of these. We will be sending you lots of information about SXSW as soon as you confirm your participation — and we believe this information will answer most of your questions. But, if you need an answer immediately, that is what we are here for.

Once again, congratulations on being selected as part of the 2010 SXSW Interactive Festival! Also, thanks for bearing with us on this form letter. We promise that future communications will be more personalized!

Best regards,

Hugh Forrest
SXSW Interactive Festival
March 12-16, 2010
Austin, Texas

http://www.sxsw.com/interactive

All Photos

What can I say? Last night was the time of my life.  We went to see Colin Hay, of “Men at Work,” at the Dosey Doe in the Woodlands. Thanks to my friend, Matt Jones, for talking the time and effort to make this meeting happen. For someone as famous as Colin to take the time to meet and talk to me, was the best thing that ever happened to me. And for him to mention my name before he sang my favorite song, “Waiting for my real life to begin,”was incredible.  What more can anyone ask for.  Colin talked to me for a long peroid of time. And he made me feel like I’ve known him for years.   His new hit “California” is terrific! I know I’m going to support Collin Hay as he is supporting JUST  ASK! by wearing my shirt to help spread awareness for nf. I hope anyone that has nf will support Collin as he is helping support nf. Buy his cd’s!

(From left to right) John Person, William Hughes, Geo Austin, Marla Hill, Clive Hill, Matt Jones, Colin Hay, Colin’s Tour Manager Ace, Reggie Bibbs, Julie Stewart, Tim Drysdale, Karen Daly, Stephen Daly, Lou Congelio.

LYRICS TO WAITING FOR MY REAL LIFE TO BEGIN  – Colin Hay (more…)

Reggie is the one on the right.

PHOTOS

jptex: I said you are a pathologist….

Guest34: A pathologist of the speech kind haha

I wouldn’t work with dead people because its kind of hard to teach/evaluate their speech.

adgiant: Yea, they tend to mumble

jptex: You will love to come here and here us Texans talk

Guest34: Well I’m just here under guest

Is that so?

adgiant: Evere see 6th sense?

Guest34: Nah

adgiant: the kid saw dead people. I hear dead people. (more…)

Reggie,

there I was, back in my home town for the PA HOG Rally.  Nothing to do with farm animals, HOG stands for Harley Owner’s Group.  The rally was a bit of a let down, compared to some we have attended over the years, but being back home was great.

Thought you might want to see my small effort to get the word out in Western PA.

Your friend,
Ed Olsavicky

Lou’s vacation photos from Houston to New Orleans to Memphis TN to Nashville TN to Cincinatti OH to Youngstown OH to Franklin PA to Cleveland OH to Knoxville TB to Tuscaloosa Alabama to New Orleans to Houston