Hello. I know we’ve sort of lost contact, you and I, for the past…46 years. I never write, never call, never visit. Sorry? Or…you’re welcome. Whatever the case, I’m here now and I have some things to say. You don’t know this about me, but I really like lists. Because the Capitol is so well-ordered, I’m assuming you must like ’em too, so here we go.
1) Do you see this group of people? They are my country.
This is a bus full of wheel chairs and power scooters and each one is occupied by a wonderful, brave, brilliant person who probably will not be here two years. Those are the facts. ALS is relentless, merciless and no matter how strong these men and women were before the diagnosis, they will not be able to fight what’s coming without some help and a lot of money. That’s why we’re here.
2. This is us:
John lost his stepdad to ALS. Beth lost her father to ALS. Aubrey lost a dear friend to ALS. Carolyn lost her dad and Barb lost her sweet brother, Randy, to ALS. All of us have been profoundly affected by a disease that gets very little attention.
None of us feel like crusaders, but we’re willing to do just about anything to see something change for people faced with the devastation of an ALS diagnosis.
3. Mostly what we’re going to do, it turns out, is walk:
Please know, we don’t walk for ourselves. Even if a cure was found today, it wouldn’t change the situations that we have faced or are facing. In fact, all of us are committed to prioritizing our time and using it for those we love. We think you’re awesome, Congress, but you’re not on our bucket list. What IS on our list? Finding a cure. And finding a cure starts with funding a cure. So…here we are.
4. Because we know money is tight, we’re not asking for more. We’re just asking that you won’t cut the ALS research budget like you did a few years ago. Ten million dollars sounds like a lot, but it’s a drop in the bucket when you measure it against the desperate need for a cure.
We will meet with anyone. Your awesome (and very young!) aides:
Or, if you happen to show up while we’re telling our story in the hall…then we’d love to talk to you (thanks, Congressman Walden!)
We represent those we love and the army of friends who stand with us as we walk the road through this difficult country.
We will wait:
And we will tell our story over and over again, even though it’s hard every time and even though we are probably the eleventy billionth appointment in your day. Still, we knock on your door and tell you the truth and ask for your help.
Because that’s how it’s done in this country. We care for the helpless and we love those who are up against a fierce fight.
This is America.
And this is why you signed up.
Thank you for listening, for your compassion, for always giving us time and grace to be broken in a building that feels so “fixed.”
Thank you, most of all, for drafting 7.5 million dollars of the 10 million we asked for into the DOD budget the VERY next day! What a fantastic and immediate result (don’t worry – we won’t expect that every time we show up.)
In closing, it was a difficult and divine day, much like America herself. Thank you.
We are so grateful.
Yours for the land that we love,
P.S. Mad photo props to the amazing Barb Deeming. All the good photos in this post are hers.