MDA Announces ADA Webinar

It's the week of the webinar announcement.

Following was received from MDA:

To: MDA Families and MDA Advocates
From: Advocacy — MDA
Date: April 13, 2011


Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You


MDA is proud to offer an expert-hosted public webinar series for the MDA community. This installment, “Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You,” will be hosted by Robyn Powell, disability rights program manager with the Equal Rights Center. Please join us as we discuss the resources, challenges and successes regarding these issues and the laws that protect individuals with a disability.

Topic: Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You

Date and Time: April 26, 2011, 4 p.m. Eastern Daylight Time; 2 p.m. MDT; 1 p.m. PDT

Event password: advocacy1

Event address for attendees: https://mdaevents1.webex.com/mdaevents1/onstage/g.php?d=666443449&t=a

Interested individuals will need to pre-register to attend this session. To do so simply:
Click on the event link above.
On the events page, scroll down and click on the “register” button.
On the registration page, enter the registration password and click “submit.” For this session, the registration password is advocacy1.
You will be taken to a page where you will be asked to enter your name, email address and mailing address, and click “submit.” An automatic email will be generated and sent directly to you.
If you have questions about signing in and/or registration, please contact Alicia King at (202) 828-8560.

Note: Due to the large volume of callers and the amount of background noise associated with these calls, the lines will be muted during the presentation. We highly encourage you to submit your discussion-related questions in advance to advocacy@mdausa.org. They will be submitted directly to Ms. Powell and addressed in her presentation.

ALSA Announces Social Security Webinar

Manana (April 14)

http://www.alsa.org/als-care/resources/webinars.html

ALSTDI Announces Advocacy Webinar

Following is from Rob Goldstein of ALSTDI:

Next month, as we have done for the last several years, ALS TDI has organized a webinar devoted entirely to the discussion of "ALS Advocacy". This discussion will be lead by Carol Hamilton (ALS TDI) and Annie Kennedy (MDA). Each of the speakers are their organization's government affairs person and have a great deal of knowledge and passion for ending ALS and the role that advocacy plays in that.

So, we would like your questions in advance! Please email any questions you have on ALS Advocacy to me at rgoldstein@als.net and we'll compile this list for Carol and Annie to prepare responses for.

We also invite all to register for this webinar via this link: http://als.net/Webinars/Default.aspx

The webinar is May 4th at 1pm.

Here Is Living Proof That People With ALS Are Bright Lights

Here is an interesting letter that is pertinent to the U.S. national ALS Registry and the substantial advocacy work that has enabled it. It was written by a gentleman with ALS.

http://bit.ly/fN2TCk

Many of us look forward to the response and to some status information on the registry project. People with ALS have all their marbles (and many obviously have a considerable marble count), and they have skin in this substantial government project. This has been described as a well-funded project by the CDC. We all hope that it delivers.

ALSA Sends Information Regarding Public Policy Conference

Following is from an email received from the ALS Association:

Do you want to hear the latest news about clinical trials taking place now that show great promise for treating ALS? Then join us at the 2011 National ALS Advocacy Day and Public Policy Conference, which will be held in Washington DC May 8-10. Researchers from Biogen Idec, Knopp Biosciences and the biopharmaceutical company Cytokinetics will participate in a plenary session during the conference to update the ALS community about their companies' trials which are testing new treatments for ALS.

Visit The ALS Association website (http://www.alsa.org/advocacy/advocacy-day/) and register and reserve your hotel room TODAY! Time is running out as the deadline to receive reduced conference registration and hotel rates is this Friday, April 8!

The State of ALS Research Plenary Session: Biogen Idec/Knopp Biosciences: Last week, the first person with ALS enrolled in a Phase III trial of dexpramipexole. The drug has shown promise during earlier trials, including showing a trend towards slowing functional decline and a trend toward extending survival. The drug has been granted Fast Track status by the FDA, which may expedite its review. Additional information about the trial is available here: http://www.alsa.org/news/archive/dexpramipexole-phase3.html.

Cytokinetics: The company currently is testing a drug that may delay the onset and magnitude of fatigue in people with ALS and enable them to better perform activities of daily living. The drug currently is in a Phase IIa trial. Additional information about the drug is available here: http://www.cytokinetics.com/pdf/ALSFactSheet.pdf.

At the plenary session, ALS Association Chief Scientist, Dr. Lucie Bruijn will join researchers from the companies as she leads an interactive discussion about these and other exciting clinical trials that are underway in the United States and around the world. The interactive format of the session will provide attendees the opportunity to ask questions and receive the latest news about potential breakthroughs in the treatment of ALS.

To register and learn more about the 2011 conference program, go to http://www.alsa.org/advocacy/advocacy-day/. Register TODAY!

MDA Requests Advocacy Action

Following is a from a message received from the MDA:

We're calling all members of our MDA community to help us put an end to Medicare's competitive bidding program for durable medical equipment services and supplies.

Representatives Glenn Thompson, R-Pa., and Jason Altmire, D-Pa., have introduced H.R. 1041, also known as the Fairness in Medicare Bidding Act. It's a bipartisan bill to repeal the Medicare competitive bidding program for quality durable medical equipment and prosthetics, orthotics and supplies (DMEPOS) for seniors and people with disabilities.

Since the bidding program began January 1, patients, clinicians and home care providers have reported:

• difficulty finding a local equipment or service provider;
• delays in obtaining medically required equipment and services;
• longer than necessary hospital stays due to trouble discharging patients to home-based care; and
• fewer choices in providers and reduced quality.

Please contact your local member of the House of Representatives and let her/him know that you support H.R. 1041 and the elimination of Medicare's durable medical equipment competitive bidding program.

Make sure that our unified community's voice is heard. Taking action takes less than 5 minutes. We have posted a template on our website to help you get started. It's easy — just open the tool, click on the name of the bill, and enter your ZIP code to take action now!

Also, please share this information with friends, family, neighbors and co-workers, and ask them to Take 5!

There is great strength in our MDA community.

Annie Kennedy

MDA Senior Vice President — Advocacy

ALS Brings Out The Redeeming Social Value

http://www.mtv.com/news/articles/1661010/facebook-diary.jhtml Watch the whole video.

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!!

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

Here's another attention-grabbing awareness campaign --

http://www.autismspeaks.org/press/world_autism_awareness_day_light_it_up_blue.php

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.

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/.

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.

http://www.staradvertiser.com/news/20110323_Newsboys_ebullient_face_became_symbol_of_statehood.html#

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

Here Are Lou Gehrig (Before the ALS) and Babe Ruth

http://video.nytimes.com/video/2011/03/22/multimedia/100000000738078/rare-ruth-and-gehrig-video-revealed.html

Great video!

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).

Is That A Red "Strike Out ALS" Wristband In Elle This Month?

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!

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.

Twice In One Week, Lou Gehrig's Disease Is Mentioned in USA Today!

http://www.usatoday.com/tech/news/2011-03-10-twittercitiesonline10_st_n.htm

It was nice of the reporter to defy 140 characters and spell out Lou Gehrig's Disease!

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...

http://yourlife.usatoday.com/health/medical/managingillness/story/2011/03/ALS-disease-affects-bodies-not-determination/44655194/1

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.

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.

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.

http://www.ibj.com/2011-health-care-heroes-robert-m-pascuzzi/PARAMS/article/25668

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.