by Ivydragon » Aug 22, 2005 2:28 pm
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!"
Mom to Aaron 14 (HG), Anna 11 (HG), Adam 8 (adopted), Andrew 8 (adopted), fostering a newborn . . .