Cathy Speck Goes to Washington! Really!

NOTE: Photos are coming and will be posted next!!

Our trip to Wash DC was Stoop end us! Fantabulous, exhilarating, awe-inspiring, and at the same time frustrating and tear-making. Yes, I cried like a baby — like a tall, blond, bespectacled baby with a walker covered in silly toys and honkers! Woo Woo…what Honkers they are!

I found out that only an estimated 400 people in the US have the SOD1 positive chromosome, and that mine (the same one that has affected our family) is the only one know that has a mutation on exon 5 E133A.  The largest study so far includes only 40 familial ALS patients, and only 16 of them are SOD positive! And the E133A mutation is too rare to include in any clinical medication trials.

I already “knew ” this. But to hear it from the top familial ALS Researcher in the USA (he’s actually from South Africa, so he has a lovely accent) was devastating.  He said something like, “We, and other researchers, currently, do NOT have the funds to do more of the necessary research…..etc, etc, etc.”

They are constantly being given information, facts, ideas, hypotheses, and theories — but don’t have enough money to follow up.

Depending on with whom you speak you’ll hear differing opinions on how close they are to breaking the “code.”  And even then, after it works with mice it takes awhile to get it OK’d for human clinical research trials. So it’s up to those of us (who are able) to raise more awareness, and in turn, try to get more private funding, grants, etc.

The good news is that when they do “crack the code,” it will most likely help with Parkinson’s, Huntington’s, MS and other diseases that have similar symptoms.

And as far as addressing Congress, it was pretty clear that the Republicans (except for one or two) probably wouldn’t support any appropriations (funding for more research) because of the national debt. The Democrats were much more willing to say that they will sign the bill although they have to be careful because they want to be re-elected, and don’t want to be blamed for even more “liberal” spending. Politics! Grrrr.

I must say; however, that ALL the Republicans, Democrats, and Tea Party members were supportive emotionally. They were kind and sympathetic and even emotional because many of them had relatives or friends who died of sporadic ALS.  So, we were treated very well, and we felt “heard” and respected. They all thanked us for the work we’re doing.

This was the first year at the National ALS Advocacy Day  (always held in May in Wash DC) that they offered a session on Familial ALS. The session was supposed to last from 4 to 5 PM, but it lasted until 7 PM because there was such a need for our voices to be heard.

I’m sure you can imagine that I sat front ‘n center, first row, right where the speaker could see and hear me (That’s the “A” student in me).

I asked a lot of questions. During a short break, several people came up to me and said something like “Thank you SO much for asking those questions. I’ve been trying for years to get that addressed.”

Anyway, my walker and my honking put a little bit of lightness in an otherwise very heavy-hearted room.  Or maybe just I felt heavy-hearted. So–I honked my horn and made my little animals talk and laugh. A girl’s gotta do what a girl’s gotta do. No, not doo doo or doodie!

Despite some of the sadness in this session, it was my favorite part of the conference. I met the most wonderful people, one young woman who has lost 20 family members to FALS (Familial ALS). Others had eight or more or less, but, by that time my head was swimming with statistics. And there is a fantastic woman who does a wonderful job with family tree, ancestor stuff. I was completely physically and emotionally wiped out after that session.

However, the next morning when I awoke, I decided to stick with my “attitude of gratitude,” and stay on the path of ALS awareness and ALS funding.

As far as our “lobbying” on Capitol Hill (which, by way, really IS a hill- my legs got quite the work-out), Amy Sugimoto (The Sac ALS Executive Director), Linda and I made very powerful, professional, yet touching presentations. Amy is a real go-getter, and I’m glad she’s on OUR team! Linda, also, is a very articulate and knowledgeable speaker. And I can really HONK my horn!

We had our photos taken with some members of Congress and their aides (we will post them to the blong soon!).

I couldn’t help but notice that I saw several Monica Lewinsky-ish interns. They’re being trained for something I’m sure, and the fashion must include low-cut blouses with big…umm, err, uh…. boobs!  Of course, I didn’t look at them I just looked at the heels of their shoes, wondering how they can walk around all day on the marble floor tiles. Maybe sometimes they get off their feet. Hmmmm…

We had a little bit of time to do some sightseeing. We want to go back in this autumn, so we can really soak it all in. Our hotel was one block away from the White House, and we could see the Washington Monument and the Capitol all from one spot. So much to see and do and not enough time nor energy, of course, on my part.

We have Sharon and Brit McLin to thank for buying our flight tickets!

We began our journey on Sunday and after checking into the hotel, we found a deli so we could fuel our souls and bodies. Then we went to an ALS Candlelight Vigil at the Freedom Plaza, which is where Martin Luther King began the famous Freedom March that ended up at the Lincoln Memorial where he gave his famous “I have a dream” speech.

And of course humongous thanks to ALSSAC for granting us the opportunity to advocate for ALS, and have such a tremendous adventure. Have I used enough superlatives yet?!

Oh yes! We had the most awesome-o driver take us back to Dulles Airport. He drives one of these big, black, dark-tinted window Suburbans that are usually carrying movie stars our politicians. Turns out he has driven many famous people around DC, like Monica Lewinsky and her infamous lawyer, also Barbra Streisand, Mary Tyler Moore, John Wayne, Mikhail Gorbachov, Mike Tyson. Newt Gingrich, and Wynton Marsalis–on and on. We had a little extra time, so he gave us a free tour of some of the monuments. He’s a tour guide as a side job, so we got quite a treat.

All in all it was a super adventure, and I feel even more inspired to spend energy to find the cause and cure of ALS.

xoxox,

Cathy The Toothless Flying Wonder

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