Thursday, May 01, 2008

Last week Janet and Callum and I went to DC for Fight SMA’s annual conference, “The Good Fight.” We’ve been in touch with Fight SMA’s head honcho Martha Slay for a while now (as it turns out Steve Cummings, original drummer of the Dismemberment Plan, used to work for Fight SMA, and he put us in touch with them when he first heard about Callum’s diagnosis), but this is the first time we’ve actually made the trek down to DC for the conference, and it was great. It began Wednesday morning with an update of recent research, from a panel of SMA experts from around the country, and from there went into a more open discussion of how people are handling the disease in their daily lives. All this was worthwhile of course, but above all it was amazing to be surrounded by people whose lives had all been changed by SMA, families and individuals for whom no explanations were necessary. It was a really deep feeling of community, and the whole experience brought a lot of emotion to the surface for both Janet and me.
It was great to meet Martha and her husband Joe face-to-face, as they and their teenage son Andrew have been a real source of inspiration to us as we come to grips with this disease and its implications for all our lives.
But the biggest catalyst for this trip was that Fight SMA had arranged meetings on Thursday on Capitol Hill to drum up support for the SMA Treatment Acceleration Act. This is legislation that, if it passed, would triple government funding for ongoing SMA research – some of which has had very exciting results – to move into actual human clinical trials. It would also enable better organization, smoother cash flow, and better data sharing between all the many camps engaged in this research. Because SMA can be traced to a mutation in a single gene, N.I.H. recently singled this disease out of 600 neurological disorders as the neuromuscular disease closest to effective treatment, and this bill would extend their efforts to fast-track and expand research that has already yielded very promising results in the lab. Some even suggest that if NIH had the funding they’re looking for, an effective treatment or even a cure could be attainable within the next 5 years (when Janet and I heard this at the conference, we were dumbfounded, since only a year ago our specialist told us “there will be a cure for SMA within my lifetime, but it’s not likely within Callum’s lifetime.”).
So the three of us, along with a few other Marylanders affected by SMA, actually went to see our elected representatives. We met with staff in Barbara Mikulski’s office and Ben Cardin’s office, to try to get them to co-sponsor the Act. It was crazy – Janet and I both flip-flopped between an inspired feeling of “democracy in action” and a sort of Kafkaesque numbness, but we had what we think were really good meetings, and we felt we stated our case about as eloquently as we could. It was certainly the first time I’ve dared to hope aloud that there might be a cure for this in time for Callum to reap the benefit. It was weird to be choking back tears in the Hart Senate Office Building.

There is a sort of expiration date for this Act, in that once the election rolls around in November, so much will change in Washington (rotation and replacement of committee members, calls for various kinds of “reform,” the priority changes that inevitably come with a change of guard) that the SMA Treatment Acceleration Act will likely be pulled back into the legislative undertow and it may take years before we are this close to getting it passed again. So before November, we want to encourage anyone who cares to take action. In the hope that anyone reading this blog is willing to spend a few minutes and some postage, Fight SMA has provided the raw materials and info for writing letters to your elected representatives:

– A form letter (to customize as you see fit) expressing support for the SMA Treatment Acceleration Act, and urging your representative to support it and hopefully co-sponsor it.

– The full text of the SMA Treatment Acceleration Act.

– Your representatives in the House and the Senate, and how to contact them.

Any expression of support for this Act is worthwhile: emails, calls, letters. But the main goal is to get Senators and Congresspeople to actively co-sponsor it, because the more of them that do (as opposed to just stating their support for it), the more likely it is to actually get through.

Thanks and love
J, Janet and Cal


Marcus said...


I contacted my congressman and senators. I'm glad to help in any way I can.

J said...

I wish you the best of luck.

Titus said...

I'm not seeing any North Carolina representatives on the SMA Treatment Acceleration Act cosponsor list. I'll do what I can to change that.

Lindsay Maines said...

Emails posted to Van Hollen, Mikulski and Cardin. But I'm sure that you guys made a huge could you not? You're amazing. See you at the Black Cat on the 13th.

Nina said...

I hope Callum is doing well. Good for you to be so aggressive. Please read Elizabeth's web-site at
Lots of great info on there about care for for Type 1s with SMA.
Elizabeth will be 5 in Sept. and is truely a great kid. She is fighter.

Titus said...

That's a first. I've never been called by a Senator's office before. Just wanted to drop in and say that the office of Senator Burr (from NC) just called to thank me for the correspondence about S. 2042. I know Burr is on the HELP Committee, so I look forward to reading more positive news about the act passing.

Scott said...

Hi J,

Perhaps you remember me. My name is Scott Huegel and I was in Spoke from Gainesville. We played with you guys a couple of times back in the Jawbox days. I was the "bass player".

Anyway, I found out all about your son through Kim some time ago. J, there are no words really. As I am now a father myself, and because I remember the brief time we hung out with real fondness, I wanted to do something. Anything.

So, I sent you guys a direct donation. It's a token man, and I wish I could do more, but I suppose I merely wanted you to know that a guy from your past is thinking about you and your family.

Take care,