neurofibromatosis cafe

A place to talk about NF, have fun and share.

“Dear Congressman, we need money for NF research!”

3273717777_fbd42738b0_bFriends 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 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.

ALSO – pass this email on to your friends and relatives. Every letter counts (all US states)! Thanks for your time and continued effort to provide hope for NF patients, family members and friends!

Susan Johnson

Texas Neurofibromatosis Foundation Board President

cell: 512.826.8770

Support Neurofibromatosis Research

Representative (insert name) Washington, DC

Dear Representative (insert name):

As someone affected by Neurofibromatosis (NF), I am writing to ask for your support of Neurofibromatosis research through both the Department of Defense (DoD) and the National Institutes of Health (NIH). I specifically ask for your support by signing onto a letter seeking $20 million for FY10 from DoD to continue the Army’s highly successful Neurofibromatosis Research Program, and by signing onto a letter to the Appropriations subcommittee on Labor, Health and Human Services, seeking the inclusion of Report language on NF research. Thanks to the subcommittee’s past support, significant advances in NF research have been made over the past years and researchers are now on the threshold of a treatment and a cure for this terrible disease.

NF involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death. NF is the most common neurological disorder caused by a single gene and it affects approximately 100,000 Americans. However, because of NF’s close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss, and brain tumors, research on NF stands to benefit 175 million Americans in this generation alone.

The modest investment in NF research has already resulted in major breakthroughs toward a treatment and a cure for this terrible disease. However, I believe that we must continue to invest in research if we are to continue to advance toward treatments and cures for the numerous diseases associated with NF.

I thank you for your consideration of this request and I look forward to working with you as we advance toward treatments and cures for NF and the numerous diseases with which NF is associated. In the house please contact the office of Representative Gutierrez, Virginia Zigras at or Victoria Sanville of Representative Peter Roskam’s office at The deadline to sign these letters is April 1st.

Sincerely, (insert name and full mailing address)

March 16, 2009 - Posted by | neurofibromatosis, Research, Texas NF Foundation | , , , ,


  1. My letter has been sent. Lets post here is you have sent your letter or will send it soon.

    Comment by Reggie Bibbs | March 16, 2009 | Reply

  2. I sent mine last week

    Comment by JohnP | March 16, 2009 | Reply

  3. I hope congressmen will agree with you and you’ll receive money! Kind regards my friends Francis

    Comment by Boyer-Madrieres.Francis | March 17, 2009 | Reply

  4. Thanks Francis, I got your email. have a great day.

    Comment by Reggie Bibbs | March 17, 2009 | Reply

  5. Francis,

    I forgot. can you leave a link to your blog so our friends here can go to your page. It will be great to see the great work you are doing France.

    Comment by Reggie Bibbs | March 17, 2009 | Reply

  6. Francis, are you aware of any research for NF happening in France? Just curious to see where the bulk of the research is being done or is it equally distributed throughout the world?

    Comment by Lou | March 17, 2009 | Reply

  7. Hi My friends
    If you want to see my blog click my name “boyer-Mdrieres.Francis”
    Of course I’m aware about NF in France also associations give money for the research and I read all about news NF. That is not easy when the text is in english.
    If you can read my blog you’ll see what I do!

    Comment by Boyer-Madrieres.Francis | March 18, 2009 | Reply

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