Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, April 21, 2012

Ten Travel Tips For ALS Advocacy Day

If you're not registered for the ALSA Advocacy Conference, you might be interested in the conference materials --

If you are registered, here are some tips for your travel planning.

  1. Take and wear things that let the public know that your cause is ALS.  It starts at the airport or the parking lot and continues to Starbucks and the hotel staff.  This can be a period of constant ALS awareness.
  2. Ask lots of questions at the conference.  There is never enough time for Q and A at the conference sessions; however, that shouldn't discourage people from trying. 
  3. Read up on the advocacy priorities.  Sure, they tell you that you don't need to be a policy wonk, but you'll be a lot more credible if you understand what you're asking for.
  4. Google "Dee Chiplock ALS Advocacy," and read about a terrific advocacy role model.  She spoke up.  She made some presenters at the advocacy conference uncomfortable.  She acted like someone who needed to accomplish much in a short period of time.  She rocked boats and she rocked. She died before her second advocacy conference, but she left her mark.
  5. Use your facebook page or a blog site or an organization's facebook wall or a message board or twitter and share your experiences.  Let those young legislative staff members you talk to that you'll be sharing online.  You'll be amazed at how many visits you'll get from .gov people when you put your impressions online for the world to see.
  6. If you are taking the kids, get them engaged.  It's a great civics lesson.  Legislators are pushovers for kids, too, and even the most difficult ones will find it hard to dismiss a child asking for research for Mom or Dad's terminal disease.  Kids are more than little ALS fundraising machines.  We need their brains and their passion. One of those smart kids or a classmate may be the one to figure out ALS.  What better writing exercise than describing a day on Capitol Hill for their classmates?
  7. Rest up if you can.  The day on Capitol Hill is exhausting.
  8. A man with ALS told me at the end of the day on the Hill that he got some things off his chest.  Get some things off your chest.
  9. Speak up. Speak up to the people who are supposed to be representing you in government. You pay their salaries. Speak up the the organizations that are supposed to be representing you.  Speak up to the government-sponsored researchers who are supposed to be delivering for you.  Speak up.  I realize that's a poor choice of words for people whose speech has been stolen, but please find a way to be heard or seen!
  10. Find a way to make the message stick.  People go back every year and talk to legislative staff members about ALS and ALS in the military and ALS research.  Every year those staff members seem clueless. We need to make the messages stick!
Have safe travels and please raise some Cain.

No comments:

Post a Comment