Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Ok, so promised to post more about the Million Women March. It was AWESOME. Don't get me wrong, the day was freeeezing cold which was horrible. As a result I think fewer people came than might have otherwise come (plus it was on a weekday, and wasn't well advertised, they did the advertising through word of mouth only). But that didn't stop us.
There were 300 or so people that came. Men, women, their kids, doctors, patients, parents...everyone was there to support US. It started at 1301 Constitution Ave, about a block from the White House (ok, one really long block in truth). In this gorgeous historic adutitorium. Picture huge columns, high ceilings, gorgeous windows, and wood floors. They had coffee, juice, and breakfast foods out (fresh sliced fruit, bagels, etc.). They had quite a few educational speeches and panelists from all over. The president of the Endometriosis Association was there Mary Lou Balweg, so I finally got to meet her in person (had talked with her on the phone before). Dr. Statton was there from NIH. Ok, I'm going to press submit because long posts get lost sometimes. But I'll write more.
There were 300 or so people that came. Men, women, their kids, doctors, patients, parents...everyone was there to support US. It started at 1301 Constitution Ave, about a block from the White House (ok, one really long block in truth). In this gorgeous historic adutitorium. Picture huge columns, high ceilings, gorgeous windows, and wood floors. They had coffee, juice, and breakfast foods out (fresh sliced fruit, bagels, etc.). They had quite a few educational speeches and panelists from all over. The president of the Endometriosis Association was there Mary Lou Balweg, so I finally got to meet her in person (had talked with her on the phone before). Dr. Statton was there from NIH. Ok, I'm going to press submit because long posts get lost sometimes. But I'll write more.
We then walked down to the national mall (it's a park where you are surrounded by monuments, the capital, and the Smithsonian museums) where they had talks from patients who has horrific things happen. People who had 18 surgeries, a woman who got atypical symptoms at age 9, ones whose doctors didn't believe her, etc., etc. It was freezing cold outside, like 25 and with wind chill it was closer to maybe 15. So I was there with a baby and decided to go into the Air and Space Museum (all the museums in DC are free so it was an easy choice). So I missed many of those talks which was unfortunate, I got back out just in time to hear Sheryl Crow - YEAH! And then we lined up with the sponsor - this awesome doctor from California, as well as the Law and Order actress (who has endo), and a bunch of congressmen. We marched on the mall and at the end we all got a metal and a t-shirt. I proudly wore the shirt! Everyone was decked out in bright bright yellow in support of finding a cure for endo.
After the march, we went back to the same auditorium where there was a reception with awesome food, drinks, hot apple cider, smoothies, apple pie, stuffed artichokes, etc., etc. where we sat at tables and got to know our endo sisters. I made awesome friends and we exchanged email addresses.
I hope they have it again next year too. Oh, and they had video footage of other events in Jamacia and other countries.
The president of the endo association asked that we all write our doctors - the ones who didn't listen to our concerns. and send them a gentle and friendly letter outlining our path to being properly diagnosed.
Also, one person said that as many as 85% of all women with fibroids have endo. Crazy, right? They said if that's true, then more than 1 in 10 women have endo. They also think that endo is actually multiple diseases not just one and finding a cure is uncovering the multiple diseases underneath.
Oh, lastly they are getting close to being able to diagnose with a blood test. There are some tests that they can do to see endometriomas and so some women may be diagnosed now without surgery - but of course they should then have surgery to remove the cyst. There's just so much research happening that it's great news. A couple years ago alone 15 million dollars were spent on endo research.
It gave me such hope. Would love to hear your comments or questions.
Oh, someone also mentioned the Endo Ball in NYC (not sure if you've seen it before but it's expensive! a real fundraiser where a table costs $10,000). Well, she said that she heard that they now let everyone come in for $50 to dance the night away. You don't get a table or dinner, but can come and dance. I thought that was cool and I may need to check it out in the future.
Can't wait till next year!
Everyone was decked out in yellow - including tennis shoes.
:-)
It was the Nezhat family. Hard name to remember!
Here's the link:
http://www.millionwomenmarch2014.org/sponsors/
You guys can checkout the video they made of the march/speakers. It's on Youtube and on the Million Women March's website. Some of the speakers were just WOW, so inspiring. They were supposed to have a video for the virtual marchers, but I didn't see it anywhere.
i have asked the headquarters already about next years march- and we are not sponsored. We have to try to do this all on our own if we want to do it again. The Nezhat family sponsored the whole thing.. sure they shed a few bucks! hope we can pull it together:)
BTW I'm totally bummed/mad at the both of you for not replying to my earlier post, I would have LOVED to have met my DS sisters!! :-)
Next time.
Now, say again - so who has to fund it? The family isn't going to sponsor this next year? Also, how did they get to the 2,000 participants number? I don't think I saw that many people, but looks can be deceiving! :-)
it was awesome... i saw the numbers on the sight i believe, the app? i too wish we could have met... i hadn't checked up on here due to the amount of fundraising!
Thank you for fundraising to come. We should get some sponsors. Maybe the groups that were there would all kick in some funds too...!?!?
Anyone want to help reach out to them with me?
The makers of the Moon Cup and The Keeper should also be good companies to contact about sponsorship.