OK...it's a big idea....but try and follow it...

[megs4413]

Here's what I'm thinking: Get HG survivors trained up by the HER foundation to offer HG support. Here's what I'm envisioning:

yearly HG conferences where sufferers, survivors, supporters...can gather and get info and training (workshops...) in order to be qualified to offer IRL support to women suffering from HG and to healthcare pros. We would go into our communities after the conferences armed with pamphlets and credentials (thanks to the conferences) as representatives for the HER foundation. We could lobby doc's offices, ER's, doulas,hospitals, home health co.'s, and midwivery's to carry the pamphlets and distribute them to women receiving an HG diagnosis. That way they would have the website address right there and a contact name (the HG rep.) to speak with. We obviously wouldn't be health care pros, but i feel like being trained to deal with doc's offices and such would give us some help and some credibility when trying to get these pamphlets out to the women who need them....i was shocked at the hyperemesis printout they gave me from the ER with my discharge instructions...it was just SOOO inaccurate! Why can't they give out a pamphlet that will actually HELP you? I know this idea is pretty involved, and would be very difficult to enact...but it could really do some good! We would be HER reps instead of pharm reps but it would work much the same way.

I've been wanting to bring up the idea of a conference for awhile, i know it's not real realistic because we're all so far apart, but i still dream about being able to meet many of you all in one place someday....ANYWAY..waddya think?

[Proudmama]

What a wonderful idea. I just love it. I understand that with ladies across the world, we would not all be able to attend but there is always teleconferencing. We could set up a big screen and do a videocast. I know it cost money but we have to do something. Let me know how I can help.

[justme]

I am totally in . . . plus, I was talking to Marti (blessedw4) the other day and she suggested a walk or something as a fundraiser for HER and publicity for hg. Obviously, no currently pg moms could apply (nor would they want to).

Karen

[tatteredtoo]

I'm all for it! I know with our young kids and our family just starting out that we probably couldn't afford to fly all over the place to attend a confrence or confrences, but I would really LOVE to someday. I would love to NOW, actually. I think walks/fundraisers is a great idea, too. These are such great ideas, I wish I knew a better way to help make them a reality! I honestly have only heard of about 4 or so other women from my area (SL County Utah), includng two women I recently met HERE on the forums, and wouldn't have the slightest clue about how to pull of something huge like a walk, but with all the walks that they have here during the spring, summer and even some in the fall, I know it's entirely possible. Has anyone set something like tht up before?
Great ideas!

[Rubygirl8808]

In my pre-HG life I was a corporate event planner so I have some experience with organizing conventions and meetings. The cheapest way is to book an event room or meeting hall within a hotel. The hotel will usually provide a considerable room discount since the event is held on premise. The more attendees the higher the discount rate usually is for the rooms. I would suggest first deciding on a location and then researching hotels in the area that could accomadate such a large group. Obviously, airfare is harder to negotiate. When working with these hotels , it is possible to coordinate a basic price per person to include their hotel stay and banquet fee. I am used to organizing this with a set budget and a corporate credit card but I think it could probabley be done...hmm now I feel the old wheel turning again...good idea to get us all in one room! Can't even imagine menu planning for an event like this-just kidding

[tatteredtoo]

Maybe if someone really wants to take charge, and it's ok with the administrators, we could do a survey about a HER F. Confrence. Asking things like, "If you could attend a confrence for HG, would you?", "Where would you attend a confrence if we were to hold one?", etc. and see how many women here, probably postpartum, would be interested and go from there. Then perhaps a poll could be done to decide where a confrence could take place, and even if it's a small one done partially out of pocket, it'd be a start somewhere. *shrugs*
I know that even with our tight budget as it is, if there were an HG Confrence here in the Western US, I'd do my best to be there. It would probably be too much for us to fly outside of the western US within the next year or two, though. I'm really looking forward to something like this even if I can't attend, just the thought of it as a 'could be' is awesome to me!

[tgger007]

I think it is a great idea!!

For airfare discounts.. The best place to have a first conf would be something like Orlando or Vegas. Because they want people to go, Disney or the Casinos help drop the plane fare. Just an idea

I used to help do conf also with the Jaycees. We did it locally *Indianapolis*

[Mikey&Bree'sMama(src)]

What an awesome idea! They have foundations with fundraisers, awareness campaigns and walks for just about every disease known to man--I'm sure **something** could be done for HG!

Here's the snag, though...all the big, nationally/internationally recognized "Awareness" campaigns have a celebrity spokesperson--not always someone with the disease themself, usually just someone who knows a person affected by it. Who might we get to promote HG awareness??? I know I've read that Maria Shriver had HG, but she is reportedly very private about it...

If there was an HG conference somewhere in the US, I would love to be there!
Just don't get Miriam Erick to plan the menu, or we'll be eating **foodment**pickles, potato chips and lemonade!!

[Heatherly]

Sick or not, I would be there. As for a walk to raise money? I am not above being pushed in my wheelchair. I think this is a great idea and with all my spare time on the couch lately, plan to do some research. After suffering like this I dont think I could live with myself if I didn't help people after this is over. I am all for getting trained and using my time to distribute information and assisting other women get the help they so desperately need. I am anxious to check back as the days and weeks go by to see what everyone suggests and thinks.

[megs4413]

it's been awhile since i first posted this but don't think i've for gotten for one second!

I have made it my new mission in life or life's dream as it were, to become a HER patient advocate....what's that, you say? well it doesn't exist----YET......

I'm a SAHM right now but eventually my children will be in school (or be grown) and it will leave me with a good deal of time on my hands.....i have every intention of pursuing a career at that time and my chosen career just so happens to not pay and not exist!

I think the key here is that we mommas who graduate out of the tri folders and eventualy move one....COULD still be active in the HG community...i don't want to forget where i came from and leave the new mommies behind...so my goal is to be an "activist" for the rest of my life.

I am currently an HG patient, though, so all big ideas and big planning will have to wait until after this latest bout is over!

[tlm5999]

What about seeing if a local church would donate the use of their building for a conference, then we could use any hotel/motel we could afford. If you were to negotiate with the hotels in the area you can get group discounts that can be purchased individually. We could also do a video conference, if HER could record a speaker they could post a link to it that you would have to be logged in to view then there would be a record as to who watched it abd after viewing it you would be able to print out a certification certificate.
Another idea for the walk, what if we all were able to coordinate something in our own towns with the administrators support. We could set a day and see if our personal family and friends would run the event. If we could get some one to right up a "how to" for setting up the event and coordinating one with a list of everything we needed to do, I think we could do it. Since it is for a non-profit organization I'm sure a lot of the things could be donated (read tax-deductable).

[mrsbigdog]

I have a ton of experience working and planning fund raisers for non-profits and some event planning type experience (tons of time on board of directors and being chairperson of events). I have a few very good ideas of how to pull these things together but need a bit of "thinking time" to get my ideas in order. Pray that my life gets a bit simpler soon and I'll get working on the ideas and sharing them.

Donna

[AndreaMMS]

Ohmygosh, I LOVE this idea!!!

I was just saying to a friend of mine the other day that I wish I could somehow have a job helping women with HG.

I'm a SAHM right now but eventually my children will be in school (or be grown) and it will leave me with a good deal of time on my hands.....i have every intention of pursuing a career at that time and my chosen career just so happens to not pay and not exist!

I'm in the same boat. Somehow we have to come up with an HG Masters program!

[tatteredtoo]

This is exactly why I'd love to become a doula, too. I want to help pg women that can't exactly help themselves... I had little to no help and it hurts to know that there are so many others out there (esp with HG) who don't have the kind of support that they NEED, let alone what they DESERVE. I know some people think that Doulas only work with the birthing process, but if I become a doula, I want to help with the entire process; pregnancy, birth, then immediate post partum care.
Anyway, ladies, someday there just might be a career developed just for those of us who would really like to see this now-dream a reality... an HG mentor or some kind.
I think we all have the potential to do great things and I think that those great things can happen if and when we all work together to achieve it. I don't know how to 'start' a project such as an HG mentor confrence, or what have you, but count on me to be as much a part of it as I can when it does take off.

[natacha]

Wow, what a great idea. I was just thinking of calling up my OB and asking her if she had any HG patients who needed a buddy. This is far bigger and better (though I will still call my OB!). If an event like this happens I would be there!

[jesspinky1]

I love the idea! Next year when all my children (except William) are in school full time, I would love to be a big part of something.

How does one become a Doula?

[megs4413]

to become a doula you have to go through an accrediting association...the most common is DONA international. they have a certification process that inclues reading books, attending a conference, childbirth classes, attending live births...etc.

Donna (mrsbigdog) and i were talking about this very project when i met her a couple weeks ago. neither of us can work on it right now (as i'm still preggo!) but would like to really get moving on planning next year. i will add your name to my mentail list of who to contact when i get some stuff going this fall...