DC Update & News for Dec 2005

The HER Foundation presented a Congressional Briefing on Sept. 28, 2005.

Moderator: Kimber

DC Update & News for Dec 2005

Postby Kimber » Dec 09, 2005 10:30 pm

Hi everyone. Now that things are finally settling down, I have a chance to tell you that since our trip to DC, the King's have had the opportunity to speak with a few very high level staff that manage the CDC and NIH. They are very interested in helping us and are looking for funding for our research. We don't have a committment yet but everything is positive. I spent the afternoon after the briefing walking the halls of the congressional buildings with Dr. Munch who is a social worker and researcher who is very dedicated to HG. We spoke with several legislative aids for various members and all were interested in our cause, saying they would review the bill when it was complete, though I am sure that is what they say to all visitors.

Thank you everyone who supported us and sent information and pictures as well. Everything was helpful and we appreciated the help very much. Feel free to forward me any information or pictures of yourselves that you would allow us to use in a presentation like this next time. I would really like to do a poster of before and after pictures of women. I won't ever post them on the web! They speak volumes about what we endure.

I am very sorry I have not updated you much before this. Those of us involved were consumed with preparation for weeks before and I think we are all just getting caught up in our personal lives. We have had contacts occurring weekly in DC and I was hoping to get a commitment so I could announce the progress. Also, we still plan to share speeches and other info from the trip. The King's have had some major changes in their lives including the loss of a family member, so as soon as they recover, we will complete this project. We hope to have another campaign next year to raise money for educational efforts and perhaps research if the NIH does not come up with funding.

On another very exciting note, USC in LA is moving ahead and has approval to publish the results of our online suveys that so many of you have so kindly spent time updating. It was worth it. We are finding a wealth of info. Just a few preliminary tidbits - we have to finalize these, but in a random review of women given numerous treatments like Zofran and TPN, compared to those given few, the rates of problems in the child were significantly less in the aggressively treated group. We also found a loss rate four times greater in women with HG v. those with 'normal' pregnancies. Thank you all for participating. If you had several family members who also participated, please let me know. We are trying to confirm the somewhat surprisingly high rate of female relatives with HG in the participants. This suggests that there is a genetic link and we have set up a genetic study for twins that we are hoping to begin in 2006, pending funding.

Also, if you are in California and would like to participate in local research, please let us know. We are talking with a CA group that evaluates the long term health of children born to mothers with complicated pregnancies. Dr. Goodwin has contacted them about doing a special focus on women with HG. We need participants for this. I will be adding a few research studies on the research page soon. Also, we are improving the survey and launch an expanded (but smart so it will skip unnecessary questions) version of it that everyone can participate in. We have a few questions that we either need more detail on or the results were obscure, so we are doing a new one with additional questions that will be published eventually as well. This is being managed mostly by USC.

I will update everyone as we hear more news. Again, thanks to everyone who helped us and who donated to cover the expenses of the briefing. As always, none of us are compensated and we always pay for our travel and other related expenses, so donations always go toward research campaigns.

I wish you a wonderful holiday with your family. We look forward to continuing our support of women with HG and the increasing number of health professionals contacting us. We are averaging nearly 38k visits monthly to the site, with a growing number from outside the US. Please check our Press Center periodically to see new articles on HG.

HER Foundation Co-Founder
Director of Ed & Research
2 pg w/nine-months of HG
Mom of two - 1999, 2003
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Postby Ivydragon » Dec 10, 2005 12:34 pm

This is fantastic Kimber. I know many women are interested in purchasing a copy of the video tape. Please let us know when that is available to us.

Caroline from Motherisk just posted a Canadian study on proactive care that one of our members will be participating in, and that looks very interesting as well. I thought you'd want to know about it so you can watch the progress. I think Dr. Goodwin would find it of interest as well.

I am thrilled with the results of the study, Kimber, I, and I'm sure others as well, have long suspected many of the outcomes. It's nice to know there is some proof.

Huge hugs - things are settling down here, too. Been working on the forums again. I am so glad to know that things are progressing on so many fronts.

Mom to Aaron 14 (HG), Anna 11 (HG), Adam 8 (adopted), Andrew 8 (adopted), fostering a newborn . . .
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