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.

Thursday, December 30, 2010

People With ALS Deserve A Happier New Year Than This


The following was posted on the ALS forum at www.patientslikeme.com:



People with ALS deserve a more respectful salutation than, "Dear Consumer," and a better approach to quality homecare.

Saturday, December 25, 2010

ALS Has A Way Of Defining The Meaning of Christmas

It's the best of times and the worst of times.

William Wan hits a home run in his feature in the Christmas Eve Washington Post --
http://www.washingtonpost.com/wp-dyn/content/article/2010/12/23/AR2010122305469.html

This is an important story that hundreds of thousands of people have experienced first-hand as the Hermans experience every day. Thanks, Mr. Wan, for telling it so beautifully.

Friday, December 17, 2010

Please Take 15 Minutes And Chime In

One of the comments on the posting regarding the ALSA Advocacy Listening Tour for 2011 hit the nail on the head -- "If they do ask for your input- what IS YOUR input? What do you think is of utmost importance?"

Here's your chance to speak up and share your ideas. It will take around 15 minutes to complete the survey. We'll summarize the results and will share them with the advocacy departments at ALSA, ALS TDI, and the MDA... and with all of you here. Please click the link below, chime in, and make a difference!

ALS Advocacy Survey

Wednesday, December 15, 2010

Urgent Action Item

From ALS TDI http://www.als.net/forum/Default.aspx?g=posts&m=328809#328809

Please! Call your legislators immediately to urge them to support the Omnibus spending bill! The bill contains millions of dollars for ALS, that could evaporate if this bill is not passed. The bill must be voted by Saturday, so this is an immediate need. Please contact me with any questions.Thank you,
Carol HamiltonDirector of Government Affairs and Foundations
ALS TDI
chamilton@als.net


https://writerep.house.gov/writerep/welcome.shtml

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Has your opinion been solicited yet for ALSA's Advocacy Listening Tour that is currently gathering feedback for advocacy priorities for 2011?

We started a poll earlier and had some viewing problems on some machines, so please just chime in with your Yes or No response in the comments area below. Thanks.

As of 8:30 am EST when this posting was started we had
1 Yes vote
3 No votes

Thanks for chiming in below.

Thursday, December 9, 2010

Something Really Nice Is Happening Today


While the ALS / MND organizations and scientists meet in Orlando this week, ALS TDI has been kind enough to be the ears and eyes and messengers into those meetings for the thousands of interested people who can't be there.


So follow @ALSTDI on twitter (hashtag #ALSSYMP) or like ALS TDI on Facebook or simply check out the forum at http://www.als.net/ .


This is why iPhones and Android phones and Blackberries were invented. This kind of live interaction is perhaps the highest use of twitter and Facebook.


Thanks for making us all a part of those meetings, ALS TDI. It's pretty exciting when those with ALS and those who care about it know the pulse and information as things unfold... and it's a blessing to be able to be a part of those meetings remotely.

Monday, December 6, 2010

Here's A Question For The Global ALS MND Organizations

As you get your heads together in Orlando this week, please consider this.

We know that there is an increased incidence in ALS in those who have served in the U.S. military.

Have any other countries studied to see if that is the case in their military veterans?

If there have been no such studies, would some not seem like an urgent need? If there have been such studies, the world is all ears to hear about them.

Is it a military phenomenon or an American military phenomenon? It would seem that the answer to that question might yield some important clues.

Sunday, December 5, 2010

Stem Cells for $1000, Please, Alex


On Thursday afternoon, there will be a special opportunity to ask the experts at the big ALS organizations' meetings in Orlando. People with ALS and their families are welcome to attend. No reservation is required.


As you can see on the agenda, there are short discussion periods after each presentation for people to "Ask The Experts."

If you are attending and would like to submit your question in advance, or if you are unable to attend, you may submit questions to the moderator, Sharon Matland, Vice President, Patient Services, ALS Association smatland@alsa-national.org .

We hope that many are able to take advantage of this opportunity to access these prominent scientists with their questions.

Let's Hope That Some Good News Is Coming From Orlando In The Next Few Days


This week there are large, annual, international meetings of motor neuron disease (ALS) organizations in Orlando.

This is the first in ALSadvocacy's memory that the meetings have been held in the U.S.

On Tuesday and Wednesday the organization of organizations will hold internal meetings. Let's hope that the topic of sending out some global shock waves via a unified global ALS MND awareness day might cross their minds. Let's hope that those who venture over to the Disney complex will pay attention to the creativity and energy that can make an organization stand above the others. Let's hope that they're ready to try some radically new and different approaches to creating awareness of ALS. Let's hope because the status quo hasn't worked.

On Thursday, a special "Ask The Experts" forum will be held. Let's hope that some insightful questions will spur some new thinking into some new answers. Let's hope.

On Friday, a special forum for health professionals dealing with ALS will be held. Let's hope that some innovative approaches to delivering healthcare for those with ALS will be discussed. Let's hope that the American healthcare delivery system for those with ALS might learn some new concepts. Let's hope.

The culmination of the meetings will be on Saturday the 11th through Monday the 13th when the international innovators in ALS research and in dealing with ALS will give their presentations. Let's hope that something new and newsworthy is going to be revealed as a part of these presentations. Let's hope that some new clinical trial success or drug development investment will be revealed. Let's hope because we have decades of promise without deliverables.

That's a very long set of meetings and we have some hopes. Talk's cheap. Show us what you can do differently, motor neuron disease organizations, to beat this beast of a disease.