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

Today was a great day at M.D. Anderson Cancer Center. The Texas NF Foundation put on a symposium for NF patients detailing the latest treatment options, research, genetic testing, clinical trials, learning disabilities, and educational partnerships regarding neurofibromatosis. We had incredible presenters: Dr. John Slopis, Dr. Bartlett Moore, Dr. Ian McCutcheon, Dr. Shweta Dhar, Dr. Laura Klesse and Brenda Nelson.

Drs. John Slopis and Bart Moore, Reggie Bibbs and Dr. Ian McCutcheon of M.D. Anderson Cancer Center

PHOTOS

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Jill Lyons Cannon and Family at Airport

My trip to Salt Lake City was the best ever. I met Maurice, his wife and kids. Brenda, Maurice’s mom is an amazing lady. I felt so welcome when I walked in the house. The kids and family members made me feel at home. Maurice and I really had a great talk, fun conversation. Amazing how we both have the same thoughts about  we live our lives.  I know I was bless by this family. Found new friends,  that I will always keep in contact with.

A producer from a U.K. production company, Darlow Smithson, came to town today to begin shooting a documentary about neurofibromatosis. They will be taping Reggie for the next seven days in Houston and Salk Lake City, Utah, along with a fellow NF’er, Maurice. Today, they shot Reggie at home getting ready for his trip to Utah, i.e., ironing, packing, talking about the trip with his mother, Dorothy, and basically documenting a day in the life of Reggie, a guy with NF. PHOTOS

12th Carolyn Farb Lecture in Neurofibromatosis

Whats new in Neurofibromatosis?

Of mice and men: Mouse models of NF-1 and human clinical trials

Kathryn North M.D., F.R.A.C.P.
Douglas Burrows Professor of Paediatrics
Associate Dean Children’s Hospital at Westmead
Head, Institute for Neuroscience and Muscle Research
University of Sydney
Sydney, Australia
Monday, June 14th
12:00 noon
Hickey Auditorium
11th floor
UT M.D. Anderson Cancer Center
Box lunches will be available for the first 50 attendees

Kathryn North is Head of the Institute for Neuroscience and Muscle Research and Associate Dean of the Clinical School, The Children’s Hospital at Westmead. She is also the Douglas Burrows Professor and Head of the Discipline of Pediatrics and Child Health, Faculty of Medicine, University of Sydney. In 2008 was honored by the Human Genetics Society of Australasia for her achievements in genetic research. She is currently a member of the Children’s Hospital Research Executive and Research Committee, and the University of Sydney Medical Deans Advisory Committee. She is Chairman of the Genetics Sub Committee of the Australian Association of Neurologists.
Dr. North is widely acknowledged as a world leader in Neurofibromatosis research.

Anyone who wishes to meet privately with Dr. North during her visit please contact Bartlett Moore (713-794-4066) or Tracey Martin (713-792-6227)

More photos right here

What a great night at the Roller Derby. Please meet my new friends in the photos above. The friends above made the night special f. I don’t remember the little girls name in the photo. She was specially nice, and caring. Seem to be concern about me. I hope she knows that because of her and her Dad and friends I had a terrific night. Thank you for asking about nf, and for taking a photo with me.

Of course it is always fun watching all the roller derby action. All of the teams are good at what they do, Roller Derby, a good place for anyone to go, and get treated as if, you of you are the champs. All the teams treat the fans as if we are playing. Hats off to all of the HRD for treating the so special.

Our friends William Hughes and Matt Jones produced this amazing video to honor Reggie and to help him in his effort to increase awareness of neurofibromatosis. Well done, guys!

I was invited for the second time to attend the Walk With Grace event for the Neurofibromatosis Support Group of West Michigan.  I’m thankful to be included.   I will be a guest at the home of my friends, Debbi and Matt Hanlon.  I’m looking forward to the visit and seeing the Hanlon family once again and their beautiful daughter, Grace, as they are very nice people who really care about raising awareness of NF.

Info

The Neurofibromatosis Support Group of West Michigan was founded in January, 1985 by Sue deGroot, MSW, a social worker at Spectrum Health in Grand Rapids. Of the 45 people who attended the first meeting, most had little or no information about NF or were misinformed. Nearly everyone thought neurofibromatosis was a rare disease, and theirs was the only family they knew affected by it. Today we know that NF affects one in every 3-4000 births and is the most common genetic disorder affecting the nervous system.

The support group was turned over to the members in 1986. It continues to meet several times a year,

usually at the Blodgett Campus of Spectrum Health. Families come to meetings from Kalamazoo, Holland, Muskegon and parts in between, as well as from Grand Rapids. Meetings usually feature a speaker on a topic related to NF and ample time to meet people with similar concerns. The annual picnic (last Sunday in July) and Christmas Party (first Saturday in December) are both popular events.

Educational materials are provided free to NF individuals and families and to their physicians, teachers, social workers, etc. Newsletters and email messages keep the membership informed of group activities, research developments, available services, and more. In 2004 the newsletter is reaching nearly 800 households and 400 professionals. The support group is particularly proud of the NF Clinic which opened at Blodgett in 1989 – the only NF Clinic on the west side of Michigan.

It is extremely stressful, even frightening, to have a family member diagnosed with a genetic disorder. The support group wants every person and family affected by neurofibromatosis to have somewhere to call for information and someone to talk to. No one should feel alone in dealing with these concerns.

The goals established for the neurofibromatosis support group in 1988 are still valid and viable in 2004. Our goals are:

1. To provide emotional support for persons affected and their families.
2. To assist NF families in getting appropriate medical care.
3. To educate ourselves and the public about NF.
4. To assist the medical community in better recognizing and diagnosing NF.
5. To encourage research through participation and, for those able, through financial contributions.

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