Who's going to Capitol Hill in DC

[Ivydragon]

I am! I've been asked to speak for 5-8 min. I've already bought my plane tickets. I thought you'd all want to know.

I haven't the faintest idea what to wear, lol. I've already colored my hair redder, and got a professional hairdo.

I'm starting to get excited.

Andy

[IslandDreamer]

Good for you, Andy!!! So excited to have you speak for us.

I wish I could go. I could maybe go money-wise as we have a frequent flyer ticket dh said I could use, but it's the middle of a work week, and I need to start paying of these last two pgs that are sitting on credit cards and rolling through collection agencies

[aaronsmommy]

It'll be so great to meet you there!

Mike, Aaron and I are all going. Do I need to worry about what to wear too? I thought the idea of going and talking was bad enough!

[IslandDreamer]

Andy and Aimee,

Will you tell us more about the itinerary and what the goals are, etc.?

Thanks.

[bibliojo]

I'd like to hear more about what you guys are going to do too! Lucky you Andy and Aimee! LOL, the only Washington that I'll get to is the state directly below us!

Joanna

[Ivydragon]

Joanna,

The only Washington you'll get to happens to be my favorite one. Of course, as my husband dictates this message for me, he is shooting me daggers from his eyes. He was raised near DC and knows it's better than Washington state. (Oops, she didn't actually say all that . . . back to Andy . . .) Come on down and meet us any time! We're pretty near Spokane.

Aimee,

Are you seriously going?!?! I get to meet you and Aaron?!?! He will be my first HG baby that I get to meet that isn't mine. I figure you have more clothes in your closet suitable compared to me. I am going to get help shopping for something new to wear.

I'll type more about the goals and schedule from what I understand in the morning.

I am so excited!

Andy

[nomore]

Im excited to hear more about this!!!! I know we wont make it... as being in the middle of HG, traveling the 20 min to my DR is about ALL the traveling I can handle.

So what exactly have you each been asked to speak about?

Robin

[aaronsmommy]

Andy - We are definitely going - plane tickets purchased and everything. Mike loves DC - he's a social studies teacher after all. Are any of the rest of your family going? It's a great place for a family trip, but it sure is expensive. Where are you staying? I can't decide what to do about that - Aaron won't sleep if he's in the same room with us, and the suites there are so pricey. I'd go further out to the suburbs, but he still takes a nap. It sure was easier to travel before.

My understanding is that we will each talk for a few minutes about our experience with hg, how it has changed our lives - with a special focus on loss. I'm sure we will have lots of different stories.

[Kariinbliss]

Few "dumb" questions... Where will you be speaking? To whom? How did this come about? I'm so lost! GL to all of you, enjoy your trip and THANK YOU for making such a difference!

[Jolene]

I think it is so awesome that you are going to speak about HG. It is so important to bring attention to it! Especially on Capitol Hill, how important is that??

As for what to wear, I love this department! I would dress simply and comfortably because if you feel comfortable, you will be more relaxed. I would wear something classy, maybe a nice skirt that falls below the knee or a nice pair of pants. You can't go wrong with a blouse, it is always perfect. If it is chilly, a simple cardigan to go over it. Colors? I would go for something muted and simple. You want people to focus on your words not a bright pattern or design on your clothes!

I wish you both good luck and please let us kow how it goes. It is still a ways away, but time will fly!

Jolene

[IslandDreamer]

If I could go, I could go as a prop. All stinky and in a wheelchair cause it's all too far to walk. My hair mats easily now, and I've got some new blemishes to add to the effect. And I would be sure to put giant labels with price tags on my handy dandy medicine box. Oh yes, and we could hang numbers off of me for how many hg pgs I've had and how none of them counts in the national statistics because I managed to beg off, avoid, or be denied (depending on pg) in-patient care.

Alright, Jolene's advice is much more practical. I know...

[Proudmama]

It would have been nice if this was a few weeks ago. I was on a business trip there.

I am not sure if this is posted anywhere but will this be televised? I would love to watch your briefing.

Andy,
As for clothing, I would recommend clothing similar to what Jolene said. Business suits are always a good bet when going to DC on business. A nice blouse underneath would also be good. Just a thought...

Good Luck

[Gail]

I am so glad this being addressed!!. I wish I could go, I live 30 min's from DC. (We will be in Disney world then). Will this be televised or will there be some way to acces the proceedings afterwards?

[aaronsmommy]

I think everyone should have gotten the email about it by now, but there is a thing about it on the helpHER home page now.

There isn't going to be any TV coverage, maybe next time?

The only people I know are going are Kimber, Ann-Marie and Andy (who I didn't know about until she posted this). I do think there are more.

[annmarie]

Ladies,
I just wanted you to know that we have several women coming to the HG briefing. Some who will be speaking, about 7-8 survivors. Others who will be attending to support the cause. We recommend if you do choose to come that you call your local Congressman's or Senator's office, let them know you are planning to be in town for the briefing and would like an opportunity to speak with someone in the office about the importance of research for HG and just tell them your story and how it has effected your life. The more government officials who know about the cause and meet someone live in person who has suffered through it, the more likely we will get backing for research from the NIH. (National Institute of Health)

I do hope those who want to come will try. Even though you may not speak you are there on behalf of the women in your state, county or district. Not to mention just to meet other survivors. For those who are not able to attend, please know we will represent the many issues of HG pregnancies today and the effects of the disease physically, emotionally and financially. Your stories are the reason we are able to make this happen, to many women are suffering in silence, and something must be done. Let's hope for a better future for HG women and their babies.
Sincerely,
Ann Marie :D

[Ivydragon]

This was the email sent out to everyone, so new members can read it, and regulars can delete it and still read it, lol.

I didn't know Aimee was going until she posted, either! I also have my tickets. Arriving Monday, flying out on Wednesday. Working w/ Ann Marie to see if we can all stay somewhere together. I think that would be great fun.

Andy

Email:

"Since you are active on the HER Foundation forum, I wanted to inform you about our exciting advocacy campaigns. If you have not recently logged on to our site, you will find a picture of the US Capitol that takes you to exciting information about the HG Briefing we will be conducting in Washington, DC on September 28th. <a href="http://www.helpher.org/about-her-foundation/campaigns.php">HG Campaign's</a> Here is a brief synopsis of the advocacy event...

The HG Educational Briefing is being sponsored by Congressman Dr. Dave Weldon of Florida and co-hosted by Congressman Xavier Becarra of California. Mr. Becarra's wife is a high-risk OB/GYN and is familiar with the experience of HG through her own patients and knows the importance of our issue. (She may be in attendance.)

Our keynote speaker is Dr. T. Murphy Goodwin, head of Maternal and Fetal Medicine at the University of Southern California. He has become a champion for our cause and has great passion to help HG women not only through research, but also by changing the perception of HG, and creating a protocol for the medical community. He has already put together an incredible team of researchers to conduct HG research with our foundation. However, his team is in great need of the HER Foundation's resources, as well as funding from US governmental agencies like the National Institutes of Health and the Centers for Disease Control. This is a very realistic endeavor and one that will make an incredible impact on the future of our children and other women with HG.

We are hoping to increase awareness of the incredible losses associated with HG, from the loss of jobs, friendships and even lives - both mother and child. This will be the theme of our upcoming advocacy campaign. We hope you will join us in this effort - many of us have been waiting for this opportunity for many years. The more people that participate, the greater the chance we will have a future hearing or other opportunity to educate congress on the need for HG research funding and awareness. Please see the Campaign page for info on how you can be involved. <a href="http://www.helpher.org/about-her-foundation/campaigns.php"</a>

If you have any questions, don't hesitate to email me. We are excited about these opportunities to make the voices of women with HG heard!

Oh and if you recently were pregnant and/or delivered and would like to review or edit your input to our surveys, you can log back in from the HG Research page. Here is the link to the most recent survey that we will be publishing the results of in the coming months. <a href="http://www.helpher.org/mothers/current-research/2004-survey/index.php">Survey Login</a> The HG Research section also includes links to our previous polls and surveys which we will use for media publications and medical journal publications. These are brief and if you have not already, we hope you will participate.

We are working collaboratively with the University of Southern California Maternal-Fetal Medicine team in Los Angeles, California, to publish the results of these surveys and appreciate your candid answers. In order to gain research approval, the team is required to sign confidentiality contracts and must abide by the HIPPA (health care privacy act) rules. I just want to assure you that we will always maintain the strictest confidence with all data or personal information received from you. This trust is fundamental to the success of our research programs.

Thank you!"

[jjbeck]

Hi Aimee. Is your DH speaking? Are any of the HG Husbands speaking? That might be good to hear from some of the men and how it effected them and other family members.

[shearn01]

I'm glad you guys are getting to go and speak. I would love to go, but work is conflicting. I'm excited for you all. And, Andy, I'm sure you'll look good AND professional in whatever you choose to wear!!!!