neurofibromatosis cafe

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

We endorse the The Fight For Federal Funding For NF Research Petition to U.S. Congress. SIGN PETITION BELOW

To: U.S. Congress

Neuro-fibroma-tosis. Have you ever even heard of it? Probably not, even though it is the most common neurological disorder affecting 1 in 3000 people. Neurofibromatosis (NF) is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time.

NF affects all races, all ethnic groups and both sexes equally. And as of yet, there is no known cure for NF.Clinical drug trials are being conducted by ten major hospitals called the “NF Clinical Trials Consortium”. With these trials comes the hope of accelerating drug development.

SIGN PETITION

Also, the Children’s Tumor Foundation NF Clinic Network has been formed. It was started as a pilot program of 4 clinics in 2006 and now is being rolled out nationwide to provide the best care through local clinics. Future plans include a centralized tissue repository to facilitate the study of NF biomarkers and to help identify new drug targets.

As these advances have been made, there is still a decline in federal funding. With the war in Iraq taking up so much federal funding, NF research is losing out.

The CDMRP’s NF Research Program has taken a huge hit from $25 million in 2005 to $10 million in 2007. The National Institutes of Health, who could help to continue some of this research, has also been under pressure of budget cuts. 2007 marks the fourth year in a row that the NIH’s budget hasn’t kept up with inflation, thus causing a 13% drop in real dollars.

Funding in the past has been able to help find out a great deal of information about the basic science of NF. It is unfortunate that these budget cuts are coming to light now when things have really started to accelerate.

We are here fighting for a cure, and in order to get a cure we must have the federal funding required to make these advances. We are asking that federal funding be pumped back up to AT LEAST $20 million a year. So many of us are affected by NF and dont even know it.
And for those of us who do know, for those who have to live with NF, each day can be harder than the last. Help us fight for this funding and in turn you will be helping to fight for the cure to NF, the cure that we all so desperately need!

Sincerely,

The Undersigned

CLICK HERE TO SIGN PETITION

May 11, 2007 - Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Fundraising, neurofibromatosis, NF1, Texas NF Foundation

6 Comments »

  1. THANK YOU, EMILY, FOR SENDING THIS ALONG. YOU ROCK!

    Comment by adgiant | May 11, 2007 | Reply

  2. Thank you for posting this link! Hopefully we will get a ton of signatures!
    Once this petition is full though, someone is going to have to tell me who to send it to!

    Comment by Emily | May 11, 2007 | Reply

  3. 20 Million dollars in our economy today is so miniscule it wouldn’t even make a Senator or Congressman blink an eye. It is less than .002 percent of the annual US operating budget. What’s up with this picture??? We need more signatures and we need to get their attention. Keep up your good work Reggie, Emily, Michael and Marsha.

    Comment by Jerry T | May 11, 2007 | Reply

  4. 20 million isnt really enough, but its a start. 10 million is just insulting!

    Comment by Emily | May 11, 2007 | Reply

  5. If we could all email a link of this petition to all our friends, can you imagine the results we could achieve? Here’s the link:

    NF Federal Funding Petition

    Comment by adgiant | May 12, 2007 | Reply

  6. I emailed it to everyone I know and posted it on all of my forums. I told all of them to pass it on as well.

    Comment by Emily | May 12, 2007 | Reply


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