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Post by chicagogal2 on Nov 15, 2010 20:27:53 GMT -5
I was just wondering if any of you are members of the endometriosis association out of Milwaukee WI? I emailed them asking about any local support groups in my area that might meet up 1x a month etc and they said you needed to pay to be a member to get access to that type of info. Just curious if anyone is a member and what services you take advantage of?
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Post by Karen on Nov 15, 2010 21:13:02 GMT -5
I was a member - signed up for the very same reason you did - I was looking for a support group. Though I was given the name of a contact person, I never followed through at the time. I have since let my membership lapse, but through United Way contributions at work, I am now giving them a good chunk of money this year as a donation, and will likely continue on in future years.
Their newsletters were informative - I got some good info from those, though a lot was stuff that I ignored. I'm still on their email list and get updates about some of the things they have going on. I think their website is awful and it appears that they are quite out of date (I was mailed a packet when I joined rather than getting it emailed to me, etc.) BUT I know they are making improvements. I know last summer they hired an program coordinator (I was laid off at the time and considered applying) and I noticed some changes after that and would suspect that was kind of the catalyst to some of the changes.
That being said, I think they definitely know their stuff. They have by far one of the best comprehensive books out there on endo that I've seen (see my signature line). They're also very involved in research for endo, and travel the world to educate about endo. They are involved in the campaign to end chronic pain in women (http://cjlevett.proboards.com/index.cgi?board=general&action=display&thread=3966). Basically, they aren't content to be quiet about endo! I haven't called them to get more info but wouldn't hesitate to if I needed some advice (again, need to be a member). This is why I'm more than happy to give them lots of money! I've thought about spending some time volunteering there as well but just haven't been able to find the time to go over there.
I think the membership isn't much - maybe $40? My sister gave me the membership as a gift, I think because she couldn't think of any other way to help. Perhaps a family member would consider something similar for you?
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Post by chicagogal2 on Nov 15, 2010 21:16:34 GMT -5
Aw, thanks Karen - as always you are a wealth of info and I really appreciate it! Yeah, I just got some brochures in the mail today and you are right, it's only like $30 for the year so I'll think about it for sure. Thanks!!!!
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Post by painttheseconds on Nov 16, 2010 0:42:54 GMT -5
I joined the endometriosis association right after I got diagnosed which was a few months ago. I've also read the books that Karen recommends and have found them very helpful. I had the opportunity to meet Mary Lou the woman who runs the association almost a month ago and she is very passionate about what she does. I found her very inspiring and I'm glad to be a member in order to help the association. They are some of the few people in my opinion who work hard everyday to make sure our voices are heard and that endo does not go unnoticed in the medical community. I know the association is struggling right now financially so I plan on donating more money around Christmas time and have encouraged my family to do the same.
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Post by Karen on Feb 10, 2013 10:19:38 GMT -5
Reviving this thread. Although I let my membership lapse, I give a significant amount to the Endo Association through United Way contributions at work, and after I renewed that yet again, they started sending my their newsletter again! For anyone hungry for information about endometriosis, I'd encourage you to seek them out. www.endometriosisassn.org/ They are advocates about the disease internationally. They have such a broad approach to endo - it's more than just surgical and medical treatment. They focus on ALL the ways to treat endo and prevent endo. For example, in the latest newsletter, they had book reviews for books on surgery & treatment (by Dr. Andrew Cook, whom I know several of our members have seen), infertility, thyroid disorders, cancer, detoxification, food allergies, and environmental irritants. They also had sections on research, advocacy, personal experiences with endo, etc. They really know their stuff, and they're dedicated to furthering the knowledge and research that's so desperately needed in this area! Their book (below in my signature) is also a really good starting point if you want a multi-faceted approach at not only treating endo, but achieving health.
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Post by butterfly80 on Feb 10, 2013 17:53:49 GMT -5
Thanks Karen
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