Re: Arthritis Advocates...

[Guest guest]

I just went to the website to read the testimonies...particularly the one

by KaLea was very moving to me. I immediately signed up with the AF to be

an arthritis advocate. I don't know exactly what this involves, but we

all NEED to get involved. Do you know that there are less than 200

pediatric rheumatologists in the entire country, and that some states

have no ped rheumies AT ALL? Also, out of billions of dollars of money

available for NIH research only a small fraction of that is devoted to

arthritis research. Based on the assumed figure of 300,000 children in

the US affected by arthritis (this is a guess, the number has never been

actually measured/counted), it amounts to only $23 per child devoted to

research. When I think about this, it is amazing that they have made any

strides at all against this disease.

and Rob 15 Spondy

[Guest guest]

Being in the DC area, I was fortunate enough to be able to attend the

hearing on the Arthritis Prevention, Control and Cure Act of 2004.

KaLea's testimony, as you said, was very moving. She has a very powerful

message, one that a 19 yr old should not have to be sending. All those

who testified did an outstanding job. The expressions on the senators'

faces at times made it clear that they were shocked by what they

heard..... Especially about the measly $23 per child that is spent each

year.

About the number of pediatric rheumatologists~~~ We keep hearing that

there are less than 200 (I think the number is 192) board certified

pediatric rheumatologists in the US. What we have not been told, and I'm

sure would all like to know, is just how many of those actually provide

patient care at this time. My impression is that the number quoted

includes those who are doing research or working for the pharmaceutical

industries but not seeing patients. If I am correct, the situation is

even worse than our legislators know.

Signing up to be an advocate, , basically gets you on an email list

that provides news on legislation and provides guidance when our

legislators need to be contacted. When we are asked to write our

legislators a letter is even provided that you can simply personalize

and send on or you can compose your own letter. The advocacy folks at

the Arthritis Foundation have really made it easy for all of us to get

involved in this way. There is also an " Advocacy Summit " held in March

each year. The AF provides training for everyone on the issues and on

how to be an effective advocate. The training lasts for a day and a

half. Then a day is spent on the Hill, meeting with your legislators

and/or their aides. This year, for the first time, a " Children's Summit "

was also held. Nearly 40 kids helped spread the word on the Hill!

Glad you signed up! More people involved makes it harder for us to be

ignored!!

Liz (- 12- polyarticular)

Re: Arthritis Advocates...

I just went to the website to read the testimonies...particularly the

one

by KaLea was very moving to me. I immediately signed up with the AF to

be

an arthritis advocate. I don't know exactly what this involves, but we

all NEED to get involved. Do you know that there are less than 200

pediatric rheumatologists in the entire country, and that some states

have no ped rheumies AT ALL? Also, out of billions of dollars of money

available for NIH research only a small fraction of that is devoted to

arthritis research. Based on the assumed figure of 300,000 children in

the US affected by arthritis (this is a guess, the number has never been

actually measured/counted), it amounts to only $23 per child devoted to

research. When I think about this, it is amazing that they have made any

strides at all against this disease.

and Rob 15 Spondy

[Guest guest]

Yes, the testimony was very moving, and I'm so glad the hearing took

place. But I would like to point out to the list that there is, in

fact, a pediatric rheumatologist in ton, South Carolina, my

home town. I will get his info. to post if anybody is interested.

Elisheva

> Being in the DC area, I was fortunate enough to be able to attend

the

> hearing on the Arthritis Prevention, Control and Cure Act of 2004.

> KaLea's testimony, as you said, was very moving. She has a very

powerful

> message, one that a 19 yr old should not have to be sending. All

those

> who testified did an outstanding job. The expressions on the

senators'

> faces at times made it clear that they were shocked by what they

> heard..... Especially about the measly $23 per child that is spent

each

> year.

>

> About the number of pediatric rheumatologists~~~ We keep hearing

that

> there are less than 200 (I think the number is 192) board certified

> pediatric rheumatologists in the US. What we have not been told,

and I'm

> sure would all like to know, is just how many of those actually

provide

> patient care at this time. My impression is that the number quoted

> includes those who are doing research or working for the

pharmaceutical

> industries but not seeing patients. If I am correct, the situation

is

> even worse than our legislators know.

>

> Signing up to be an advocate, , basically gets you on an

email list

> that provides news on legislation and provides guidance when our

> legislators need to be contacted. When we are asked to write our

> legislators a letter is even provided that you can simply

personalize

> and send on or you can compose your own letter. The advocacy folks

at

> the Arthritis Foundation have really made it easy for all of us to

get

> involved in this way. There is also an " Advocacy Summit " held in

March

> each year. The AF provides training for everyone on the issues and

on

> how to be an effective advocate. The training lasts for a day and a

> half. Then a day is spent on the Hill, meeting with your

legislators

> and/or their aides. This year, for the first time, a " Children's

Summit "

> was also held. Nearly 40 kids helped spread the word on the Hill!

>

> Glad you signed up! More people involved makes it harder for us to

be

> ignored!!

>

> Liz (- 12- polyarticular)

>

> Re: Arthritis Advocates...

>

> I just went to the website to read the testimonies...particularly

the

> one

> by KaLea was very moving to me. I immediately signed up with the

AF to

> be

> an arthritis advocate. I don't know exactly what this involves,

but we

> all NEED to get involved. Do you know that there are less than 200

> pediatric rheumatologists in the entire country, and that some

states

> have no ped rheumies AT ALL? Also, out of billions of dollars of

money

> available for NIH research only a small fraction of that is

devoted to

> arthritis research. Based on the assumed figure of 300,000

children in

> the US affected by arthritis (this is a guess, the number has

never been

> actually measured/counted), it amounts to only $23 per child

devoted to

> research. When I think about this, it is amazing that they have

made any

> strides at all against this disease.

> and Rob 15 Spondy

>

>