WRITE CONGRESS

The fiscal 2008 budget has been signed into law. $8 million was specifically allocated for NF research. This is less than in past years, but we are grateful that NF is research is still being funded.

This year, we had four Representatives sign on in support of NF research: Representatives Berman, Miller, Stark, and Waxman. A fifth (Representative Barbara Lee) was assigned to the appropriations committee and no longer signs letters, but truly is a “friend in high places.”

If one of these five is your representative PLEASE take a moment to email or fax a note to thank him/her. If you are not sure what to say, a short message is listed below. It could be cut and pasted into the online contact form available at the Representatives’ websites.

view sample wording #1


We have a message specifically for Representative Barbara Lee:

view sample wording #2

And finally, for those with Representatives who did not sign the letter, a message to encourage future support of NF research would be valuable. We understand that we ask this of you often, but these five minute investments of our time can results in influencing and creating powerful allies. Once our leaders understand the value of this research, they will be motivated to help. Contact information can be found at http://www.house.gov

Thank you for your support in this endeavor!


Sample wording #1

Representative Berman, Representative Miller, Representative Stark, Representative Waxman

As someone affected by Neurofibromatosis, I want to thank you for signing the “Dear Colleague” letter supporting NF research. This research offers hope to so many – those with Neurofibromatosis and those affected by cancer, nerve damage, learning delays and numerous other conditions related to NF’s complications.

With so many important issues demanding your attention, it is uplifting to have your continued support. Knowing that we are not in this quest alone makes such a difference.

Thank you,

Please sign with your name and mailing address


Sample Wording #2 Representative Barbara Lee

As someone affected by Neurofibromatosis, I want to thank you for your support of NF research during the 2008 appropriations process. This research offers hope to so many – those with Neurofibromatosis and those affected by cancer, nerve damage, learning delays and numerous other conditions related to NF’s complications.

With so many important issues demanding your attention, it is uplifting to have your continued support. Knowing that we are not in this quest alone makes such a difference.

Thank you,

Please sign with your name and mailing address