S & E from Nevada travel to California to see a Pediatric Rheumatologist
After a morning of meeting fellow advocates, training and prep for our meetings, and a fantatsic informational session from a doctor from NIH, and a doctor from CDC – we’ve finished a working lunch and are now gearing up for the bus rides to the hill.
There was so much information shared this morning… and we have so many talking points swimming in our minds. But one of the things that struck me most is that this work – the work of getting the first arthritis specific legislation in 35 years passed – is a marathon not a sprint. And it can only happen with the sweat of many, not a few. On average, it takes 13 years to get a bill passed. We don’t harbor any fantasies that we will come waltzing off the hill today having gained enough co-sponsors to move this thing forward.
But – we’re not on mile one, either. This bill actually passed in the House last congressional session – but not the Senate. We ended the session with 250 House Reps and 46 Senators. Having re-introduced the bill, we started at ground zero and are now up to 146 House Respresentatives and 20 Senators.
One of the things we talked about , is the “Thud Appeal” of the packets we are leaving behind. The packets contain letters of constituents who could not attend – and they tell personal stories of the cost of this disease – both personal and financial. Thud refers to the sound made when many voices, the voices of those voters who will be going to the polls this re-election year – are joined together in our common message. Can you imagine if only a fraction of the 46 million people affected sent a message to their congressional reps – all at once? If 1% of those affected, and 1 of their friends or family members each sent a message – we’d be almost a million strong. I hope people will take just a few moments to make their own voices heard.
Today, we’re heading to a visit with our Senator. Tomorrow, we’ll be meeting with our Representative. As we head to the hill with this message, I was to share one of the quotes from this morning that I found inspirational:
“When we are dreaming alone it is only a dream. When we are dreaming with others, it is the beginning of reality”.
Janet and Mikayla Minnig from California
art of the advocate group from California