Re: Why is Dr H's work not published?

[Guest guest]

Dr H's work is not published because she is too busy treating our

kids to publish. That is one reason why Magic is doing the

walkathon, to raise money to hire an assistant for Dr H so she can

publish.

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins

[Guest guest]

Judith answered it perfectly. The fact is that there are two types

of pediatric endocrinologists (or physicians in that matter). Ones

that are primarily involved in research and others that are

practicing physicians.

In Europe, everything is different though. Many of the practicing

physicians there are also allowed to do research -- there isn't the

push to see " X " number of patients a day.

Here in the US, most of our great practicing endocrinologists are

NOT published. Mitch Geffner is another great one. The ones that

are published are usually financially backed by outside funding.

Dr. Harbison has participated in studies that are published -- but

they are studies set up by other companies and so the topic is

growth hormone (or whatever topic it was that the pharmaceutical

company wanted tested).

In order for us to have her write/publish the stuff WE WANT, we have

to RAISE THE MONEY. If any of you are ex-grant writers, HELP!!!!

The walkathon is the easiest way I can imagine. I spent 15+ hours

creating all these cut-and-paste documents that I thought would make

it so easy for everyone, and only 28 families have signed up so far

from our division. Heart breaking for me.

I will say it again. The only way we are going to get help for our

children is IF WE DO IT OURSELVES. We don't have to be rich to

succeed. We do have to be able to work at it though.

We can not sit and wait for someone else to get the data published

for our children. We can not sit and wait for someone else to

educate the physicians in the US. We can not sit and wait for

someone else to figure out that weight is usually a more critical

issue for these kids than height.

I am blown away every day by what some of you have put together to

help raise funds for our children. I am so proud to say that I know

you!!!! I could care less if it was for MAGIC or some other non-

profit that supports RSS/SGA (sadly, there isn't anyone else in the

US). All I care about is that our RSS children deserve the best.

Every RSS child across the world deserves to have the SAME

INCREDIBLE HEALTH TREATMENT that my own daughter has received. Our

family has been incredibly blessed with the care that my daughter

has received. And yet I talk with families every day who have

gotten nothing, and it breaks my heart.

Anyway, can you tell I am in one of those " moods " ?

Thanks for everything, guys! S.

> I am curious. From reading various posts I notice that my endo is

> not the only one who said, " her work isn't published " . So, why

> isn't her work published?

>

> Thanks, Malathi

[Guest guest]

Hey guys - I just read my posting. Sorry if it sounds a little

harsh. I didn't mean it to come across that way. I type more than

80 words a minute, so I tend to type without reading, I just type as

words tumble out of my head. I forget to go back and re-read

things, and email is so hard, as words can come across short,

snappy, authoritative. Anyway, I didn't mean for my email to sound

so bad -- I think I am so tired and so desperate for funding for our

kids.... Salem

> > I am curious. From reading various posts I notice that my endo

is

> > not the only one who said, " her work isn't published " . So, why

> > isn't her work published?

> >

> > Thanks, Malathi