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.

Wednesday, March 30, 2011

Urgent Action Is Requested Regarding DOD ALS Research Program

Following is from an email from the ALS Association:

Congress is proposing to eliminate the ALS Research Program (ALSRP) at the Department of Defense. They are proposing to take millions in funding away from a program that was specifically created to find a treatment for ALS, a program that has invested nearly $18 million for ALS research in just the past three years. We need your help today to save the ALSRP! Please contact your Senators and Representative and urge them to continue funding for this vital program. Tell Congress that they need to stop ALS, not the funding that is so urgently needed to find a treatment. A sample letter, which you can personalize and send directly to your elected officials in Washington, can be found in the Advocacy Action Center of our website, http://capwiz.com/alsa/home.


Please send the letter today! And tell your friends and everyone in your address book to do the same. Congress needs to understand how critically important the ALSRP is to the search for a treatment. They need to know how important this program is to their constituents, the people with ALS they were elected to represent. Contact Congress TODAY!


If you have any questions, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-444-ALSA. Thank you!!

Saturday, March 26, 2011

Simple Concepts, Great Execution Raise Another "A" Disease's Awareness


Here's another attention-grabbing awareness campaign --

Where is that level of creativity and execution in the fight against ALS, the best kept secret of all diseases? If the public doesn't know about the ALS problem, we can't expect the kind of support needed to deal with it meaningfully. If the public doesn't know about the ALS problem, shame on us.

Thursday, March 24, 2011

Here Is A New Opportunity To Be Part Of An Important Conversation

Following is from an email from the ALS Association and tells of a welcome addition to the conference agenda:
Jay Daugherty, Chairman of The ALS Association Board of Trustees, and Jane Gilbert, President & CEO, will host a Town Hall Meeting at this year's National ALS Advocacy Conference in Washington, DC. All registered attendees are invited to participate as The Association's leadership candidly discusses our mission and vision to create a world without ALS. Don't miss this opportunity to engage The Association's top leaders. All topics are open for discussion as Jay, Jane and The Association's entire senior leadership team are available to answer your questions and share about the state of The ALS Association, where we are, where we're going.

The Town Hall Meeting will take place from 5:45 to 7:15 pm on Monday, May 9 at the JW Marriott Hotel, the conference headquarters hotel. You can be a part of the conversation by registering to attend the 2011 National ALS Advocacy Conference today. Reduced registration and hotel rates will expire on April 8, so if you plan to join us and hundreds of other ALS advocates in Washington, May 8-10, please visit The ALS Association's website and register at
www.alsa.org/advocacy/advocacy-day/.

Wednesday, March 23, 2011

We Need An Activist!

Oh that the fight against ALS might have an activist as tenth as committed and effective as Elizabeth Taylor was for the fight against AIDS!

A Smile That Marked A Moment of American History Is Gone



Aloha, Mr. Kahapea.








"He didn't let Lou Gehrig's Disease run his life."

Saturday, March 19, 2011

Do We Have Any ALS Historians Out There?


Does anyone remember how May was chosen to be ALS Awareness Month in the U.S.? If you have any insights, please post in comments or email (link under Submissions are Encouraged at right). Thanks.

Until We Can Get a Serious Advocate, We Must Rely On Each Other

http://friends4eric.blogspot.com/2011/03/public-service-announcement-2.html

Be sure to view the second PSA. This is especially striking with the before-and-after pictures (and knowing that the video was made by the man in the pictures).

Wednesday, March 16, 2011

Get Ready For ALS Awareness, America!

The award-winning Piece by Piece display is going to hit the road in a big way in a few weeks to raise ALS awareness in two great American cities.

The display poignantly shows that ALS is stealing our loved ones piece by piece. It is a moving tribute to those dealing with ALS and to those we have lost to the disease. It starts conversations and it makes the public think.

On May 3-5 it will be at Daley Plaza in the heart of downtown Chicago. It will then head east to again be a part of the important ALS Advocacy Conference and Day in Washington, DC.

See last year's trip report.

On Sunday, May 8, the display will be shown at the Navy Memorial in Washington, directly on Pennsylvania Avenue, between the White House and the Capitol Building, immediately across the street from the National Archives.

On Monday, May 9, many of Washington's workers and tourists will experience the moving exhibit when the display is set up all day at Freedom Plaza at 14th and Pennsylvania Avenue NW.

Finally, all day on Tuesday, May 10, as hundreds of advocates call on legislators on Capitol Hill, the exhibit will be displayed at a prominent Capitol Hill location. Details are coming soon.

If you are planning a trip to Advocacy Day, please plan to experience the exhibit. It is a fitting and effective awareness presence during an important time for ALS advocacy in our nation's capital. If you know people in Chicago or Washington, please let them know about the display. If you will be calling on legislators on Advocacy Day, please invite them and their staff members to stop by and experience Piece by Piece.

The ALS Association Florida Chapter will be putting on a lot of miles (and has done an amazing job of logistics) to spread ALS awareness. Steve Franks, a Floridian with ALS and an incredible commitment to raise awareness, leads the display volunteers wherever they go. We appreciate their significant efforts to bring Piece by Piece from the Sunshine State to Chicago and then to Washington to be a part of the important advocacy activities.

Football Had Something To Do With It

Here is an interesting article from ESPN on Kevin Turner, ALS, the NFL, and head injuries --

http://espn.go.com/blog/afceast/post/_/id/26976/kevin-turners-road

Information from the ALS Association

Following is from an email received from the ALS Association:

If you have not yet registered to attend the 2011 National ALS Advocacy Day and Public Policy Conference taking place in Washington DC May 8-10, please do so today at www.alsa.org/advocacy/advocacy-day/!

Your attendance at this year's conference is more important than ever. That's because programs like the ALS Research Program at the Department of Defense are under attack in Congress. In fact, your presence at the Advocacy Conference can mean the difference between millions in continued funding for ALS research or the elimination of a program that is specifically designed to find a treatment for ALS. Your Members of Congress need to see this disease up close and personal in May!

Your attendance also is critically needed to educate the more than 100 new Members of Congress about ALS and why more must be done. Some of these Members do not know the true nature of ALS and others may never even have heard about ALS. So please register to attend the conference today at www.alsa.org/advocacy/advocacy-day/. And don't delay because the early bird registration deadline is fast approaching on April 8.

In addition to advancing the fight for a treatment and cure on Capitol Hill, you will have the opportunity to participate in a number of educational and training sessions on issues that are so important to people with ALS and their caregivers. Sessions include:
• National ALS Registry: The first of two research plenary sessions will focus on government funded research programs, including the National ALS Registry and the ALS Research Program (ALSRP) at the Department of Defense. Participate to learn about the registry, how to enroll, and the next steps to expand the registry. You also will learn about specific projects funded by the ALSRP. Significant time has been set aside during the session to allow attendees the opportunity to ask questions about these vital programs.
• State of ALS Research: The second research plenary session will feature an interactive discussion with a world renowned panel of ALS scientists who will share the latest advances in the search for a treatment.
• Advocacy for Children and Families: ALS impacts the entire family and this session will provide helpful information and tools to empower children whose lives have been touched by ALS.
• Caring for our Caregivers: Learn about efforts to expand the availability of respite care services for caregivers.
• fALS: Convened in the style of a support group, this session will focus on the issues that are unique to those who share the common bond of familial ALS.
• Veterans Benefits: The session provides comprehensive information about the significant benefits available to veterans with ALS and their survivors and also provides tips on how to obtain the maximum level of benefits as soon as possible.
• Medicare & Social Security: Participate in this session to learn about Medicare and Social Security benefits and how to access them.
• Stem Cells: The session will describe the first human study involving neural stem cell transplantation for the treatment of ALS.
Additional details about the Advocacy Conference, including the candlelight vigil, a downloadable brochure and on-line registration, are available on the conference registration website at www.alsa.org/advocacy/advocacy-day/.

Register to attend today! Don't delay. Early bird deadlines to register for the conference and reserve hotel rooms are fast approaching on April 8. After April 8, the discounted room and registration rates no longer will apply (registration fees are waived for all people with ALS and a caregiver traveling with them to the conference).

Thank you!

Tuesday, March 15, 2011

How Do We Capture The Power Of Millions Of Friends?

When a friend is diagnosed with ALS, friends help friends research their options, and none of the options are great right now. How do we harness the power of millions of friends so that we can finally have some good options available?

http://liveshots.blogs.foxnews.com/2011/03/14/andy-card-joins-israeli-stem-cell-company/

Andrew Card and thousands and thousands of friends of PALS (FOPs?) and their friends would be nice additions to the ALS advocates who will be swarming on Capitol Hill on Tuesday, May 10.

Wednesday, March 9, 2011

Road Warriors, Pick Up Those Copies of USAToday Outside Your Hotel Doors!


This morning there is a wonderful feature on people with ALS for the entire nation to see...


Technology "caught up with his desire." Technology permits people with ALS to continue to be part of the conversation long after their speech neurons are toast.

Don't miss the article. It's a great lesson in ALS and in determination and in how we with healthy neurons can meet those with ALS like Jeff Lester in a world where they can shine and outshine those with far fewer physical challenges.

Read past Charlie Sheen and Jim Tressel and read about someone and something truly worthwhile. Have a good day.

Sunday, March 6, 2011

Lou Gehrig's Disease Should Not Mean Lou Gehrig's Prognosis!


Try this little experiment. Go to ebay and search for "1939 medical." That stuff looks archaic, doesn't it?
A patient who is diagnosed with ALS today has the same prognosis that Lou Gehrig had in 1939. The death sentence that accompanies ALS should also be archaic in today's world. It's outrageous that it's not.

Saturday, March 5, 2011

People Need To Know That This Is Out There...

...and it's a relentless killer!

This story should be required reading for every American!

http://www.burlingtonfreepress.com/article/20110304/NEWS02/110303049/ALS-stirs-Hinesburg-man-to-action

It's outrageous that this happens to hundreds and hundreds of American families every week. It's time to out-innovate this terrorist of a disease.

ALS Neurologist Is Honored

The fact that he is also an educator perhaps will mean that in the future some ALS cases may be diagnosed accurately and more promptly.


The public needs to know more about ALS and the fact that patients often encounter a healthcare system that can neither cure the disease nor help them deal with it effectively. This honor and article will be a good enlightener.