Pat's article

[Guest guest]

I received a letter from one of our senators Shelby,Al. I wrote

requesting funds for research for CJD. He states that the Senate voted

unanimously on May 21,l997 to commit to biomedical research double the funds

over the next five years, and that he will keep our concerns in mind as funding

is considered this year. I think we should all keep pushing for more dollars

for research. I know when Aids first came to the forefront people spoke before

the Senate requesting more funds,etc. I have asked for an audience before the

Senate and am awaiting information on that. I think if we could get a national

spokesperson, such as Aids did in the person of ,etc.we might

get further. We might could all think of someone we might approach to do that,

someone well-known. Also, I plan to put ads in several of our papers to see if

anyone has a family member with CJD that might not have heard of CJD Voice or

had no access to the Internet. I think I can cover most of Atlanta. I will let

everyone know what I find out and also if I can come up with a spokesperson.

Thanks for listening to this long letter. What do you think? Carolyn W

[Guest guest]

Carolyn,

Biomedical research will get more funds but our goal should be to increase

the NIH funding for the TSE Lab at NINDS instead of sending the money to

other areas. I tried to get a line item budget for the TSE Lab from NIH

through my previous congressman but couldn't. I am still trying. Varmus

would love to phase out the lab. The NIH budget increases but the TSE

allocation is farmed out to other facilities. I am going to learn how to

lobby congress and will have to go to Washington to do this. It would be

nice if a group of us could go.

The latest I have heard on the NINDS budget for 1999 is $869,974,000 but I do

not know how much is going to the TSE Lab. In March of 1998, I got these

figures from my congressman's office -- Dr. Gibbs' lab receives $350,000 for

operating expenses (this does not include salaries). The lab receives an

additional $500,000 for animal holding facility. The Board of Scientific

Counselors are going to review the TSE Lab this Spring. It had been

downgraded last review and got a poor rating -- " not doing good sciences " .

This is how they decrease the funding to the Lab. It is all politics.

By the way, at the JIFSAN conference last year, Brown said in answer to

H's question about publicizing the CSF test -- " 14-3-3 at NIH is only

for scientific purposes " . Dr. Gibbs (who was not at the conference) said he

will accept any fluid sent to him for testing.

What we can do is pressure Rep. Shays (Chairman, Committee on

Government Reform and Oversight, 257 Rayburn House Office Bldg., Washington,

DC 20515-6143) to hold another CJD public hearing to get the consumer and

family view. If we are successful in getting Shays to hold another hearing,

we will have to show up in numbers..............Pat