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Dear Congress: We are Here.

 

Dear Congress,

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 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,

Team Oregon

P.S.  Mad photo props to the amazing Barb Deeming.  All the good photos in this post are hers.

May 19, 2012 - 8:27 am

Kathy - Hearts beating as one. God bless you Bo and team.

May 19, 2012 - 11:56 am

Nita Belles - What a beautiful blog about some beautiful people, inside and out. You made me smile, cry and feel full of purpose all in the same few paragraphs. I would expect nothing less of you sweet Bo. Love you…24/7

May 19, 2012 - 4:36 pm

Kathy Matson - I love the drive you all have for success. This is why we live in America so we can be heard and we can help the helpless. God Bless you all for what you dol

May 20, 2012 - 1:19 am

Scott Humphreys - You should lobby for scientific research in general, not for
one specific application. Science doesnt work like that. Microwave ovens are an application of communication technology. Probably the best way to do this is to fully
fund NASA.

May 21, 2012 - 10:23 am

Lou Fuller - My husband died from als and i know what you are going thru.. God Bless you as you all struggle thru this…. and thank you for standing in my place in the halls of Congress. My heart goes out to you all….

May 21, 2012 - 11:49 am

bo - Lou – your comment made me cry. Thanks for the encouragement…it was an honor to represent you and your husband.

May 21, 2012 - 11:49 am

bo - Thanks, dear Nita!

May 21, 2012 - 11:50 am

bo - Thank you, Kathy…it was a blessing to be there.

May 21, 2012 - 11:56 am

bo - Interesting input, Scott. Many opinions abound on the best way to tackle disease research, but I do think a new level of collaboration is happening among government and private sector organizations. However, I’m not a scientist; I’m just a desperate woman who wants to fight for her husband on any possible front.

May 22, 2012 - 6:36 am

Wendy Bertram - We too live in your country. My husband is the same age as your husband Steve. He was diagnosed with ALS 12-03-10. His symptoms started in his left leg and foot which are now paralyzed, his right leg still has some strength and movement, but he has extreme weakness and fatigue thru out his body, however we are very fortunate he has no breathing issues at this time. I recently have started reading your blog and now look forward to your updates, I do not want anyone to have to go thru this disease but I don’t feel quite so alone in this after reading your story. (It’s funny how ALS can make you feel so alone in this horrible disease. I think you have to live in the same household as a person with ALS to see what they really go through.) We too want to Thank You and Your Husband for making this difficult trip on behalf of all persons with ALS! May God Bless your husband Steve ,you and your family!

May 26, 2012 - 1:56 am

Susie Kay - You are all so amazing – fight the good fight – I join you in prayer.