Reggie Bibbs and I are excited to kick-off the Just Ask World Tour at the CTF NF Forum in Scottsdale, April 17! Come join us we finally get to meet all the great CTF people in Arizona!
April 17-19, 2015: Scottsdale, AZ
The Children’s Tumor Foundation’s NF Forum is a national patient and family gathering hosted annually in different cities across the United States. The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis. The 2015 NF Forum features: NF clinical and research updates, sessions on the personal and social challenges of living with NF, interactive Q & A sessions with NF specialists, fun activities, meals, social time with friends and family, and much more!
The Children’s Tumor Foundation, mindful of the high cost of transportation and family expenses, has underwritten a significant portion of the registration in order to keep the registration costs as low as possible.
Adult (Age 21+) $99 (USD)
Youth (Ages 17-20) $75 (USD)
Child (Ages 0-16) $50 for first child ($20 for each sibling)
Sat. Dinner Guest for non-registered attendees $100 (USD)
On-Site Registration: April 17-18, 2015 $150 (USD)
If you have any questions, concerns or need further assistance please email Traceann Rose at [email protected]
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
Monday, June 14th
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)
Received this yesterday:
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 [email protected]
Patty Hall, Research Director, Neuropathy Solutions
Here is a link to past your draft letter
DRAFT Senate Support Letter
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.
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)
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. Continue reading NF Lobbyist in Washington needs our help!
From: Ed Port <[email protected]>
Date: December 27, 2008 2:56:15 AM CST
To: [email protected]
Subject: Hello Reggie from Ed Port
Reply-To: [email protected]
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
Youngstown Ohio Continue reading My new Friend, Ed Port, needs your help.