Friday, August 28, 2009

Please Help Find a Cure for Neurofibromatosis

As many of you know, my daughter and her two daughters have neurofibromatosis (NF), a genetic disorder in which tumors grow on nerve endings all over the body, inside and out. These tumors are disfiguring at the least, and debilitating and sometimes fatal at their worst. Our family is commited to NF awareness and research, hoping one day to end this dreadful disorder.

To that end, here's a message from John Risner, president of the Children's Tumor Foundation

I am sending this email to all supporters of NF research to ask for their help this year. We are proud of the advances in NF research that we have been able to be a part of, but we readily acknowledge that federal funding has been critical to this progress. In 1996 neurofibromatosis (NF) was added to The Congressionally Directed Medical Research Program (CDMRP)as one of eight disease groups. Since then this program has funded over $125 million in NF research and has been the driving force in the development of NF cell lines, drug target identification, animal model development and now is moving into clinical trial funding.

The House of Representatives included a $25 million appropriation for NF research as part of the CDMRP for FY2010. This restores the program to its FY2005 level, which had declined to $10 million in FY2009. The Senate will begin their deliberations on this bill when they return after Labor Day.

I am writing to ask you to take five minutes in the next two weeks to contact your Senators to ask for their support. A personal letter, faxed or mailed, has the most impact, but calls and emails will help as well. While all voices are important, the Senators below are members of the Appropriations Committee and key subcommittee. If you live in one of these states, your letters and calls are particularly important.

Key points to include in your communications are to thank them for the Senate's past support of this vital program, and ask for their support this year to preserve the $25 million that is included in the House budget. A history of our advocacy program, recent updates and sample letters for downloading can be found on our website at

Thank you for your past support. I hope you will take the time not only to act on this modest request, but to leverage your action by forwarding this email to family and friends and ask them to join you. The more supporters that reach out to their Senators, the greater our chances of preserving this vital funding.

If you have any questions about our advocacy program, or the legislative process for NF research, please don't hesitate to contact me by phone or email.

Best regards,

John Risner, President
Children's Tumor Foundation
Ending Neurofibromatosis Through Research
95 Pine St. 16th Floor
NY NY 10005
212 344-6633 x249

Democratic Subcommittee Members

* Senator Daniel Inouye (Chairman) (HI)
* Senator Robert C. Byrd (WV)
* Senator Patrick Leahy (VT)
* Senator Tom Harkin (IA)
* Senator Byron Dorgan (ND)
* Senator Richard Durbin (IL)
* Senator Dianne Feinstein (CA)
* Senator Barbara Mikulski (MD)
* Senator Herb Kohl (WI)
* Senator Patty Murray (WA)
* Senator Arlen Specter (PA)

Republican Subcommittee Members

* Senator Thad Cochran (MS)
* Senator Christopher Bond (MO)
* Senator Mitch McConnell (KY)
* Senator Richard Shelby (AL)
* Senator Judd Gregg (NH)
* Senator Kay Bailey Hutchison (TX)
* Senator Robert F. Bennett (UT)
* Senator Sam Brownback (KS)


It's me again. :)

My daughter recently married, despite the very real possibility that she's spend the rest of her life alone. People with tumors all over their bodies aren't prime candidates in the marriage mart, after all. You can read all about it and see some pictures here:

Down Home Ever Lovin' Mule Blues (See the Book Video featuring Justin Saragueta)
Jacquie Rogers * 1st Turning Point * Myspace * Twitter * Facebook
Faery Special Romances * Book Video * Royalties go to Children's Tumor Foundation, ending Neurofibromatosis through Research

Read a book by Jacquie Rogers

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