I have personally talked with a few people who have had loved ones with this disorder or know of one or does have NF themselves. I appreciate all comments, letters and emails from you.
The next annual forum meeting for patients and families with NF is in Bloomington, MN. in July of 2011. If you would like further information please leave your comment on this blog with email address and I will forward you the information.
I was notified regarding the funding for Neurofibromatosis Disorder by The Children's Tumor Foundation, please read below.
Dear Marette, Thank you for your past support of NF research through the Children's Tumor Foundation. We are proud of the progress we funded over the last 25 years - including discovery of the genes that cause NF, mouse models and cell lines to test promising compounds, and recently pilot clinical trials that are taking NF research from the lab to the FDA. However, we fully recognize that these accomplishments would not have been possible without federal funding for NF research, both through NIH, and more importantly through the Congressionally Directed Medical Research Program NF Research Program (CDMRP-NFRP). A recent update on the legislative process and history of this program can be read at http://www.ctf.org/How-You-Can-Help/advocacy.html This program is funded through the defense appropriations bill as part of our military's healthcare program. The House completed their work on the bill over the summer and we expect that their bill included the $20 million requested for FY2011. The Senate is currently working on their version of the defense appropriations bill, and we expect a conference committee composed of House and Senate members to meet quickly to work out the differences in the two versions and pass a joint bill. We are writing to ask you to email your Senators as soon as possible seeking their support to include $20 million of funding for the CDMRP-NFRP in FY 2011. This program has been vital to the advances we have seen in NF research, and its continued funding is critical in our drive to translate the progress made in the lab to actual FDA approved treatments for NF. You can reach your Senators by visiting http://www.senate.gov/ and clicking on "Find your Senators" in the upper right corner of the site. While all outreach is important, if you live in AL, CA, NH, IL, KS, KY, MS, MO, OH, PA, TX, UT, VT, WA, or WI your voice is particularly important. The Senators in these states (listed below) are members of the defense subcommittee of the appropriations committee which ultimately determines the success or failure of this program. It is important to note that this funding is not an earmark - it has been in existence since 1996 and none of the funding is directed to any particular company or institution until after going through a strict, two-tier peer review process. Please join us in taking the time to email both of your Senators now to help preserve this vital program. Thank you for all you do for our shared cause of ending NF through research. Sincerely yours, George T. Orfanakos and John W. Risner Children's Tumor Foundation Ending Neurofibromatosis Through Research 95 Pine St. 16th Floor NY NY 10005 212.344.6633 x249 PS- In addition to any personal stories you would like to add to emphasize the vital importance of this program, here is some suggested text: I am writing to ask for your support for $20 million of funding for the Congressionally Directed Medical Research Program- NF Research Program (CDMRP-NFRP). This program has been funded through theDepartment of Defense since 1996 and has been vital to the advances made in NF research. Critical work in nerve regeneration, brain and spinal trauma and pain management has led to important advances in research, and it is the current clinical trials consortium, funded through this program, that offers promise of actual treatments in the very near future. As the Senate considers the appropriations bill for FY2011 I hope you will support the $20 million requested for the CDMRP-NFRP. Thank you. Senators on the Appropriations Committee - Defense Subcommittee.
Republican Subcommittee Members
Folks, I wrote to our Senators and Congress with my story and plea for funding of Neurofibromatosis Disorder. If you would like to do the same, please check your states Senators and Congress address's and send letters for support for funding for research of this DISORDER. |
