Ideas to Advocate

What I do know is the MD advocacy community is fractured; as in a lot of left arms not knowing what a lot of right arms are doing. 

Short of MDA and PPMD, there aren't many major influencers in this space affecting public and social policies. There are a lot of grassroots efforts that come and go and I wonder sometimes if that is part of the challenge; because of those efforts tend to fizzle. Muscular Dystrophy needs someone/some group to own the brand of that MD in the same way a pink ribbon is almost universally recognized as the symbol for breast cancer. MD needs a symbol. It needs organization and unity. Statistics aren't in our favor, either. Cancer gets far more recognition than MD in large measure because more people are affected by it.

Regarding awareness days/months ... there seems to be a steady rise of those kinds of campaigns. When it comes to messaging ... more messages create more noise - and where there is noise there is either priority confusion or simply people tuning things out. If it is true Utah denied a petition for a MD month (which I'll look into), it is possible they considered 50 other petitions for a different disease and selected another instead – which would mean 49 other efforts would feel slighted or marginalized. Perhaps government officials have found those awareness campaigns as ineffectual and they deny everything as a matter of policy. It’s hard to know from this vantage point, but I’m sure the issues are complex.

Here is an interesting article on activism and raising awareness:

What Muscular Dystrophy (and every rare disease) needs is a calm, steady voice. That voice needs to put a face to the true human cost of the disease … to show the struggle and triumphs of those who carry the burden of care or the aftermath of loss. That voice needs inspire (not demand or shame) people into caring enough to donate time, attention and money toward awareness, treatments an ultimately a cure for disease. Ultimately, lasting awareness campaigns are matters of the heart. And if we’re to appeal to the heart, we must talk like the heart feels.