ALS Advocacy Days
We just had the most amazing experience in Washington,
D.C., for ALS Advocacy Days, presented by the ALS Association (ALSA). What struck me the most about participating in this
event was being part of this enormous cooperative effort—joining my voice with a large and vocal group of more than
650 ALS advocates from all 50 states.
ALS is so often an isolating disease; although I know the numbers by heart,
my day-to-day experience is far removed from the thousands of ALS patients and families that make up our elite club. It’s
difficult for us to physically get out and about; it’s frustrating to try to communicate with others who struggle to
make out our words; it’s infuriating for our physical limitations to prevent us from participating fully in our communities.
And while we can use many online forums to connect with the ALS community, that’s certainly no replacement for face-to-face
Which is why I’m struggling to put into words
what ALSA’s Advocacy Days meant to me. The informative meetings, social gatherings, and advocacy opportunities gave
me a chance to feel like a fully participating and productive member of society. What a wonderful feeling—and one I
don’t often experience anymore, at least never to this degree.
Maybe part of the magic
was that I felt like I was back at one of the conferences I participated in when I was still in the workforce. (Granted, there’s
a lot more at stake now, and the energy and passion far and away exceeded any corporate event I’ve ever attended. But
it did feel a bit like slipping into an old, comfortable role—the charged atmosphere of hundreds of people joined in
common cause, the badges we could easily spot in the hotel and on the Hill identifying our collective purpose, the networking
with like-minded conventioneers, and the brainstorming of ideas and sharing of success stories all left me reminiscing about
similar experiences from a lifetime ago.)
Up on the stage, the ALSA presenters did a masterful job of explaining why we were
gathered and exciting us about our opportunity to make a difference. The expert panel of researchers mesmerized us with their
brilliant efforts at unlocking the mysteries of ALS and their optimism at the tantalizing possibilities that lie ahead. The
breakout sessions provided guidance for our meetings on Capitol Hill and reassurance that in simply telling our personal stories,
we could succeed. Marty Woywod, who has been the single most influential person in motivating my own involvement in ALS activism,
gave us a real-life example of that storytelling in our first meeting and set the tone for our day.
the meetings and preparation culminated in an exhilarating day in and around the Capitol, meeting with lawmakers who can—and
I believe will—help us move this fight forward. Striding the ornate halls of the Capitol (okay, technically I was riding,
but I was striding the halls in my head), sitting in offices and meeting rooms where decisions are made and deals are brokered,
shaking hands and sitting down with members of Congress who moments before were casting votes on the floor of the House of
Representatives… Well, it was impossible not to get caught up in the excitement of taking an active role in our government
process. We had a unique opportunity to be the voices and faces for an often-forgotten community. We told our stories, garnered
support, and brainstormed more possibilities with our elected officials—people who can ultimately make a difference
through their support of bills and budget appropriations that will advance ALS research. (It might help to get the full effect
if you re-read that last paragraph again while humming “The Star-Spangled Banner” or “God Bless America.”)
We are so grateful for the support and encouragement we received from Senator Richard Durbin, Representative
Melissa Bean and Representative Mark Kirk and for the time and attention they so graciously shared with us. It is sometimes
easy in our current political environment to grow cynical of our government and how it operates. However, we have nothing
but praise for our legislators and their staff members. We were impressed with our reception, with the open exchange of ideas,
with their questions and sincere desire to help, with their willingness to go above and beyond what we were asking and to
brainstorm additional means for moving the fight forward. Every single meeting resulted in a commitment of support for the
ALS Registry Act and for continued funding for ALS research through the Department of Defense.
Which brings us to
a new question: what next?
As we heard over and over from the wonderful ALSA speakers, advocacy is a year-round
activity. While this week’s whirlwind events have come to a close, our work is not done. We plan to keep up the connections
we’ve made (and yes, we’ll do better with that than I’m doing keeping up with this blog!), and we discussed
ways to work with them to raise the profile of ALS in society at large. Stay tuned for more on that…
meantime, please spend a few minutes checking out ALSA’s Advocacy Action Center (at www.alsa.org) and find out whether or not your members of Congress have signed on as co-sponsors for the ALS Registry Act.
If not, please take a few more minutes to write and request their support via the form letter on that site (it’s
so easy!), adding a paragraph at the beginning to personalize your message (just a few sentences letting them know “here’s
why I care about this issue”). That little bit of personalization carries more weight than you might imagine—transforming
a form letter that is easily ignored into a powerful testimony from a constituent, a request carrying the weight of personal
interest and urgency. Thanks in advance for your help!
There is so much more to say about Advocacy Days and how
deeply it affected Jim, Nick, and me. I’ll try to add more thoughts in the coming days.
I realize this blogging experiment isn’t turning out too well so far, and I take full responsibility
for that. But I’m not quite ready to give up on it entirely... I tip my cap to the bloggers who update regularly, and
if anyone out there has tips they’d like to share on how they manage to juggle life and blogging, I’m open to