St. Louis where are you!!!

[leighann]

Would you email a list of possible contacts? I read the what's new page. I think the 3 of us would like to start something [;)]

Leighann 26
DH-Charles 30
EDD #1 8/8/03
Diagnosed with pre-eclampsia at 28w3d. On bedrest until Gabrielle arrives! :(
Estimated induction is 7/18 at 37w!

[angelkat]

We might be able to have Washington Univ to help us out (Barnes) since they have been doing alot of research lately....

Just a thought... [:)]

Mommy to
Drew(12)
Ky (10)
and our Angel Katlyne(12/9/02-04/02/03) forever in our hearts and thoughts

[deerhart]

I know a few place to contact with BJC to get information out as well as some places to contact at the other hospitals.

Many of them run support groups on other issues but none of PE/Pregnancy complications (I checked =/ several times *sigh*)

But there are a ton of different places to get information and such out about it

[annegarrett]

We are working on how to set up partnerships/alliances with local universities.

Per raising money for local research: We are pretty cautious about that--it has to be formal--as we have a very very strict procedure for granting research money (has to go through our medical board) and since they are entirely volunteer--I think it could get overwhelming if we got in the position of having our medical board review 50 states worth of research grant money for local universities--plus I don't think that is the best way to find the best researchers. Just think--if we wanted to sponsor research because we liked a doctor and the best researcher was just a few thousand dollars and one state away--we would be missing an opportunity.

Per support, professional education and such--we may be able to use local universities but not to the exclusion of other places in town. We are a public charity so have to be really careful about that.

So--definitely we can distribute our information to everyone but keep in mind that our personal favorites and our personal relationships are not the criteria we can use for making decisions--they have to be available equally to all people.

But great brainstorming and keep it going!



Anne

[leighann]

What I see happening is us talking with our obgyn's to start off with and mentioning this site and the foundation. See if they would be willing to mention the foundation and the site to patients with pre-e, PIH or patients tho had it previously--but also to healthy folks because knowledge is power. Hopefully we could generate more interest and also get a hold of some people who could use a place to get support and ask questions of women who have been there.

I think we should try to build a strong core group and go from there -- but I mnight be off base [;)]

Leighann 26
DH-Charles 30
EDD #1 8/8/03
Diagnosed with pre-eclampsia at 28w3d. On bedrest until Gabrielle arrives! :(
Estimated induction is 7/18 at 37w!

[annegarrett]

We are working on a lot of things at once--but should have a sample brochure that we can send out to chapters to have them distribute to their doctors and hospitals in July. The cost of printing is about 40 cents each and then we have the mailing costs--so we will have to figure out a) how many each chapter needs and b) that cost and c) each chapter will have to cover the costs. I would propose we use a suggested annual membership fee of $25 (suggested--so if you can pay less or pay more--that is fine)and membership dues will be earmarked to cover the costs of brochures until we get either those costs covered by local grants, corporate grants, donated services, etc...

Chapters should start by just being a source of one on one support and yes--definitely getting the word out to the health care professionals you know. See also about seeing who teaches prenatal classes and ask about distributing brochures there.

One thing you will see is that most people don't want to frighten pregnant women--we have to be sensitive to that--because if we are too frightening then we won't even get in the door to talk or be invited back. We have to keep things in perspective--remind them that our experience was a maybe not the norm--that most women don't get this--that we want women to be alert and aware but not to be alarmed...that general tone. We will probably want to develop a training program for the people who do these talks and make sure that we have people who know what they can and cannot say (for legal and medical liability reasons), have a health care professional there to back you up (so someone we know is well versed in the disease) and have some basic presentation in a Powerpoint with handouts done for you to present.

Maybe we will have an annual training in Seattle and chapters will be responsible for covering the costs of getting people here for that.

Let me know your thoughts. We have a couple ladies working hard to develop our "chapter guide"...can always use more ideas.

Take care,


Anne

[deerhart]

Actaully I was thinking more along the lines of getting some information including in the handouts passed out at birthing classes, chapters phone number and such listed with the hopsitals as a support group for woman that have this etc..

[leighann]

quote:

---

Originally posted by deerhart

Actaully I was thinking more along the lines of getting some information including in the handouts passed out at birthing classes, chapters phone number and such listed with the hopsitals as a support group for woman that have this etc..

---

That sounds great to me as well. [:)]

Leighann 26
DH-Charles 30
EDD #1 8/8/03
Diagnosed with pre-eclampsia at 28w3d. On bedrest until Gabrielle arrives! :(
Estimated induction is 7/18 at 37w!

[angelkat]

I would also give to WIC offices...

Mommy to
Drew(12)
Ky (10)
and our Angel Katlyne(12/9/02-04/02/03) forever in our hearts and thoughts
http://www.forevernetwork.com/Archive/lifestory.cfm?Archive_ID=10971&Directory=%2FArchives%2FMountHope&CFID=1089289&CFTOKEN=79068509

[leighann]

I agree angelKat, definitely...

So what is our next step?

Leighann 26
DH-Charles 30
EDD #1 8/8/03
Diagnosed with pre-eclampsia at 28w3d. On bedrest until Gabrielle arrives! [:(]
Induction is 7/18 at 37w! [:D]