Tips for Advocating for HG

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Tips for Advocating for HG

Postby justme » Dec 04, 2012 2:59 pm

Hello All,

As we are definitely getting a lot of discussion about HG in the news, I wanted to take a moment to share some advocacy tips with you. I write advocacy materials (for libraries), and I wanted to just make sure and touch on a few things that I have seen happen in the past regarding HG discussions. This is a HUGE moment for those of us who have dedicated ourselves to bringing HG out into the spotlight; we could not have asked for more press coverage than we have right now I think. So let's represent ourselves well and shine the spotlight on the true horror that is HG.

Represent Fellow HGers and the Cause Well
1) Some of the press are going to say incredibly uninformed things. We need to correct them but we need to do it in a way that validates the disease and gives legitimacy to our claims. No matter how angry you get, please don't call names, overinflate facts, etc. Your story is the message so share it honestly and with heart.

Refer to Legitimate Sources
2) Refer people to a legimate source. In order for people to understand HG we want them to hear our stories AND present them with facts. As a librarian, we talk a lot about the authority of our source. You want to send people to a factually accurate source that has a good reputation. Refer them to HER of course! Even when sharing your personal story, it is a good idea to remind people to seek out the facts and give them a place to do so. Facts help add legitimacy to our cause.

Calling Out Factual Errors
3) If you read an article (or view a newscast) with factual errors or misrepresentation, state specifically which parts are erroneaous (sp?), give the correct information and give them a link or a source where they can verify the information.

Remember, you are an HG survivor and you have a story to tell. Every person's story is their own and we shouldn't compare, belittle or demean anyone who has suffered in any way. Everyone's experience is different and everyone responds to different treatments.

If you can, contact your local news and offer to share your story. If you have a blog share your story. Use your various social media sites to share current news stories AND to correct any misinformation and misrepresentations that you come across. I would also suggest that you share links here to the HER foundation. In fact, it would be good to set up a thread where we do nothing but share links to keep a running look at the media coverage.

Anyhow, that is my 2 cents for today.


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Re: Tips for Advocating for HG

Postby Arias » Dec 06, 2012 7:27 pm

Thank you Karen for the advice. I am just so happy that HG is finally getting the attention it needs. Hopefully we can find a cure soon.
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Re: Tips for Advocating for HG

Postby teddi » Dec 06, 2012 9:58 pm

Excellent tips Karen! It is important to try and relay factual information and it is so hard not to be emotionally overwhelmed with all this coverage (and information/dismissive approach some of the coverage has included).
Bert , 3/2000 HG#1, wk 6 - birth, GB removed @ 16wks
Chloe & Kaylie, 12/2004 HG #2, wk 7 - birth, pre-E/pancreatitis
~Angel babe~ March 2012
~ Baby Chuckles~ July 2013
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Re: Tips for Advocating for HG

Postby truman » Dec 28, 2012 11:57 pm

I opened up an online boutique last fall. I make a variety of hand-made baby/toddler/children items. I have decided to donate a portion of my sales to the HER Foundation. If you place an order- and mention HER/HG/etc in the comments section of your order- I will donate a portion of your sale to the HER Foundation.
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Re: Tips for Advocating for HG

Postby sakirehman » Sep 17, 2013 11:11 am

Your thread is very appreciative. I like your intentions. I'm from Asia and people of Asia, Specially India, Bangladesh women suffer from it at very huge level and even they ignore it like it is nothing. Western culture has very much awareness but Eastern world lack of it very much. Can you help me? Little bit advice will be like big contribution.
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Re: Tips for Advocating for HG

Postby LedaBunny » Dec 11, 2016 10:27 am

Keep these simple tips in mind so you can share what matters to you, safely. brief image ... Relationships change and ultimately you are your best advocate.
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