Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!
Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy!
Reggie and Lou.
See below for info on the Department of Defense research program in Neurofibromatosis. It is a real good program that funds research to try to find a cure or treatment for NF but they have cut the funding down to $8M from $25M, I guess because of all this Iraq mess. I plan to write a letter to my Congress representatives and thought it would be helpful for you to also. Note that the deadline is Wednesday. I bet this would be a good topic for discussion on your Blog and might get some of those folks to write also!
Subject: NF Research Action Item – Advocacy Help Needed!
As you may know, Neurofibromatosis is one of eight disease groups included in the Congressionally Directed Medical Research Program (CDMRP). This program has been vital to many of the advances made in NF research in the last ten years. Funding has declined from a peak of $25 million in FY2005 to $8 million in FY 2008. We need your help in encouraging our legislators to preserve this program.
Senator Tom Harkin (D-IA) is circulating a “Dear Colleague” letter asking his fellow Senators to sign on and support a $20 million dollar appropriation for FY 2009. It is important we write to both our Congressman and Senators, but the deadline for signing this letter is April 9th. We all understand that our country faces financial challenges, and $20 million is a high ask in this environment. However, the funding invested in this program has produced tremendous results, and with enough support we hope to preserve this program with a modest increase.
If you can do only one thing this year to support NF research, I am asking you to write a letter this weekend and fax it your Senators, urging them to sign onto Senator Harkin’s letter.
Sample letters for this program, and links to the House and Senate website to obtain their contact information can be downloaded from our website at https://www.ctf.org . The strongest appeal you can make to your legislator is by a faxed letter (followed up by mailing the hard copy), but emails and phone calls will help as well if you do not have access to a fax machine.
Advocacy is a numbers game – the more letters we can generate to our elected officials, the better our chances to secure continued funding for this program. Please ask your friends, family and neighbors to write on behalf of NF research as well.
John Risner, President
Children’s Tumor Foundation
Ending Neurofibromatosis Through Research
95 Pine St. 16th Floor NY NY 10005
212 344-6633 x249
Ready made letters to key subcommittee members. Just click on names, replace Lou’s name and address with your own, print and fax to the fax number at the top of each letter.