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

Rosemary Anderson, Grace Hanlon and Reggie Bibbs.

Dear NF friends,

A month ago I announced Phase 2 of the Neuropathy Rx trials.  There are still plenty of openings in the trial.  If you attempted to contact Patty Hall and got no reply, please email back to me, and I will pass on your information to her.  Some emails did not get through.

Here’s my original announcement again -

Rosemary Anderson
President
NF, Inc. Michigan
NF Support Group of West Michigan
nfwestmich@aol.com
616-451-3699

Last year we helped recruit patients for an informal study of the nutritional supplement, Neuropathy Rx, for possible benefits in reducing the size of neurofibromas and preventing the development of new tumors.  Read about the product at www.neuropathysolutions.com.

Testimonial Video

Results from the initial study were very promising, so a second, more formal, study for NF1 patients is being undertaken.  The research nurse in charge of signing up participants is Patty Hall, RN.  She has written to me:

<< Here are the qualifications for the study we’re starting on Oct 1, so if you could get the word out that I’m looking for 60 patients to follow on supplement or placebo, I would appreciate it. Any interested patients can contact me at 616-826-4033 or through email at patty@terraceuticals.com. (more…)

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…)

Friends and Colleagues -

As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).

It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write. (more…)

I had a terrific meeting with Congresswoman Sheila Jackson Lee this morning!

Joining me at the Mickey Leeland Federal Building in downtown Houston this morning were Drs.Bart Moore and John Slopis from M.D. Andersen Cancer Center; Sandra Parker and her daughter, Emily,  Lou and myself. Sandra is a consumer reviewer for the research integration panel for the Department of Defense. She helps decide which NF research projects get funded based on consumer need and importance.

Congresswomen Jackson took time to meet with us even though she was hard-pressed for time having to fly back to Washington immediately after our meeting. I have to say she was great! She remembered me from a NF function years ago and was genuinely interested in everything we had to say. She seemed quite interested in our story (Emily’s and mine) and after getting all the information she needed,  told us that she would sign the petition to fund research for neurofibromatosis.

Congresswoman Lee also recommended other possible sources of funding that we should be aware of through the government. She will be signing on to keep funding research that will help neurofibromatosis, as well as other types of disorders that could lead to cancer. Everyone should be happy about that has happen today. All of us can benefit from this funding and from the wise support and leadership of Sheila Jackson Lee!         – Reggie

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

HOUSTON — (March 4, 2008) — A discussion on neurofibromatosis, a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities, will be presented in a public forum March 25 at The Health Museum of Houston.Neurofibromatosis is one of the most common genetic disorders, occurring in approximately one in 3,000 births.

The forum will feature genetic expert Dr. Maria Blazo, assistant professor of family and community medicine and molecular and human genetics at Baylor College of Medicine in Houston. The parents of a child with neurofibromatosis are also scheduled to speak.

Organized by BCM and Texas Children’s Hospital, the event is part of a monthly “Evening with Genetics” lecture series organized by BCM’s Department of Molecular and Human Genetics. The series offers current information regarding care, education and research about genetic disorders.

The program is free and open to the public. It will be held at 7 p.m. at The Health Museum of Houston, 1515 Hermann Drive. For more information or to register, contact Susan Fernbach at 832-822-4182 or fernbach@bcm.edu

Reggie,

Per our conversation on the phone, I would like to welcome you to the Honorary
Board of the Texas Neurofibromatosis Foundation. It is a privilege to have you on the board.
The foundation appreciates all you have done for Texas NF and NF awareness.

We look forward to working more with you in the Houston area.
Talk to you soon.

Cindy Hahn, M.Ed., Managing Director, Texas Neurofibromatosis Foundation (more…)

Happy New Year 2008!!!

Well, a year has passed and we are at a new beginning. I look forward to great things this year. Maybe something new for NF research. Let’s keep hope alive. Now lets talk resolutions. Or promises, or whatever you want to call it. Something I want to do this year is build up my friends list to at least 200 or 300 friends with NF on myspace.com dailystrength.com or youtube.com Any one of the three. Oh yea, one more thing. drink more Starbucks and hopefully meet with some of my friends that I talk with everyday about coffee.

On a serous note. Please remember our real HEROS in 2008 in the U.S. ARMY, and military service members. When you see someone in uniform say thank you.