catly
Senior Member
- Messages
- 284
- Location
- outside of NYC
To be honest, I think doing something similar anytime within the next six months would be a bad idea. We don't want people to become desensitized.
Although as a Marketing Major, this was absolutely brilliant from ALS.
What if we planned something BIG for May 2015. That gives us some time to plan. Llewelyn King has already proposed a Mother's March for ME on May 12, 2015. Seems that @medfeb is looking for volunteers to help.
We could kick of the month of May with some sort of campaign. 2014 marked 30 years of little to no progress for ME in the US. Maybe we make 2015 the year that brings an end to the silence and the suffering by raising awareness and increasing funding for research.
We could create a web/facebook page that provides links to the research and advocay groups we want to support. Then we need a creative way to get the message out (like the icebucket challenge) and if we can all get a handful of people to donate and share the message, it might not yield as much as the ALS challenge, but then anything is better than nothing and creating awareness is key.
The ALS foundation kicked off the campaign by sending a message to 60,000 people. That's a lot especially considering the disease effects an estimated 10,000 - 30,000 people in the US each year vs. the estimated 1,000,000 with MECFS. I'm not sure how we would find that many people to start a campaign????
Let's keep the ideas coming everyone.
Meanwhile, I'm going to send @medfeb a pm, I'd like to help with the the mothers' march at least.