ALS Advocacy

ALS Advocacy
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.

Monday, April 30, 2012

Look What A Few Million Eyes Saw In USA Today Today


Thanks to ALSA Florida Chapter for the pic and the heads-up.

We hope that this is a portent of a new and effective way of raising ALS awareness during the U.S. ALS Awareness Month!

Sunday, April 29, 2012

It's Important To Be Able To Say, "I'm in!"

Physicians don't report cases of ALS to a health agency or to the CDC.  Until a few years ago we had no census of people with ALS.  Nobody was counting noses. 

The CDC's National ALS Registry changed that.  It's important that every person with ALS self-enroll in the National ALS Registry.  This message is simple and important, yet it somehow fails to find every person with ALS.

Please help spread the word.  It's critical.  Every person with ALS should be able to say, "I'm in!"

Wednesday, April 25, 2012

Time To End The "No Harm No Foul" Mentality

People with ALS often report a long and wasteful road to getting a correct diagnosis.  They are subjected to countless irrelevant therapies and surgeries before a neurologist says, "You have ALS."

Perhaps physicians operate under a kind of no-harm-no-foul attitude.  There isn't much that they can do for a person with ALS, so maybe the delay in diagnosis isn't as troubling to them as a delay in a cancer or a diabetes diagnosis.

Wrong, Doctor.

ALS clinical trials are often limited to patients within 24 months of onset.  That's not diagnosis, that's onset of the disease.  A patient often wastes over half of that window not knowing that the fasciculations and weakness and choking are ALS.  That late diagnosis is followed by the period of shock and then the period of searching for something (like a clinical trial) that might hold some promise.  Good luck finding the right trial and being accepted with the remaining window.

It's time to make sure that physicians realize that missing a prompt and accurate diagnosis of someone with ALS does a great deal of harm. 

No more no-harm-no-foul attitudes, please.

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 -- https://docs.google.com/open?id=0B0yxxVCJLk5lS1FMZTFEOWdRMTA


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.



Wednesday, April 18, 2012

ALS -- A Disease Like No Other

Thank God.

One of the subjects of the recent national media coverage of patients making their own drug trials told me, "The FDA needs to reassess its policy with regards to ALS. It is a unique disease and requires unique FDA policies."

Are we designing and pursuing change that will make a difference for those with the disease like no other?

Good Morning, America and the World

ABC News has picked up the story...

http://abcnews.go.com/Health/Wellness/lou-gehrigs-disease-patients-research-hands/story?id=16150103#.T46mgdWiZki

This is definitely worth reading and then rereading. Eric Valor is a rock star and a wise young man.

Monday, April 16, 2012

Are There Two Doctors Jonathan Glass?

April 13, 2012
http://www.mddionline.com/article/tedmed-stem-cells


Glass had one clear message for the audience: “We must reconsider, we
must redefine, and we must recalculate what is acceptable risk. And that risk
must fit the emerging technologies and emerging therapies that hold the enormous
potential to transform the treatment of disease in the practice of
medicine.”


April, 16, 2012
http://professional.wsj.com/article/SB10001424052702304818404577345953943484054.html?mg=reno-secaucus-wsj


Jonathan D. Glass, professor of neurology and pathology at Emory
University School of Medicine and director of Emory ALS Center, is one of the
NP001 site investigators. He said he is concerned that "these people could hurt
themselves. Who knows what they are actually making in their
kitchen."


It just gets curiouser and curiouser.

The Governor And The General Are Now Aware

...and helping to pass the word forward...




Thank you, Governor Daniels and General Umbarger.

Sometimes You Take Matters Into Your Own Hands



There is an excellent article in this morning's Wall Street Journal -- "Frustrated ALS Patients Concoct Their Own Drug," by Amy Dockser Marcus.

These are not whack-job patients who are grasping at theories that make no sense. These are young, bright patients who have done their homework and have a disease with no effective treatment options. The only options that the medical establishment offers them involve a quick downhill slide to death. Who can blame them for daring an intelligent roll of the dice?

Shame on us who are healthy and have provided them with a medical establishment that has not delivered for them and that cannot deliver in a time-frame that will help them. Shame on us for painting them into a corner. Bravo to them for making the world pay attention as they try to buy some time. Ben Harris and Eric Valor are heroes.

WSJ