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.

Friday, April 29, 2011

Drink One For Dane Today



Shoot, drink two or three for Dane today. This is a great effort by Dutch Brothers to remember their bro and to raise a lot of ALS awareness and funding. www.dutchbros.com

Wednesday, April 27, 2011

Irony, Thy Name Is ALS

This must be ALS awareness week in the San Francisco Chronicle.

Here is an interesting article on Dr. Olney, a noted ALS specialist who received the diagnosis himself.

Dr. Richard Olney in last stages, study of disease
Carl T. Hall, Special to the Chronicle

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/04/25/MNHL1J5LEV.DTL


Olney's most enduring contribution to the ALS field may have less to do with the details of his final study than the commitment he has shown, relentlessly attacking a disease that soon will kill him.

It's a lesson of persistence and personal bravery that clearly has impressed his own doctors.

Corey Reich Has A Wise Father

"The main challenge... is the visibility for ALS."

"Young man with ALS doesn't give in to despair"
by David Wagner in the San Francisco Chronicle

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/04/25/DDDB1J3L3R.DTL

Here Is Your One-Page ALS Advocacy Calendar

Back by popular demand ;-]

http://tinyurl.com/437t5n3

If anyone spots errors or omissions, I'm glad for your feedback and it's easy enough to update.

Monday, April 25, 2011

Sunday, April 24, 2011

Neurology Now Features Our ALS Awareness Rockstar!

Neurology Now is an excellent publication from the American Academy of Neurology. Its articles are interesting for anyone, whether or not you are affected by a specific neurological condition.



Toward the end of each issue there is a photo-feature page spotlighting Neurology Now readers. When I turned the page in my April/May 2011 issue, I was greeted by a picture of "Piece by Piece" and Steve Franks. What a wonderful and timely honor for Steve and this moving display which will be in our nation's capital in just two weeks.



http://journals.lww.com/neurologynow/Fulltext/2011/07020/Pictures_of_You__A_Photo_Series_of_Neurology_Now.22.aspx


The publication is free for the asking. I can't recommend it highly enough. ...and I can't recommend experiencing the Piece by Piece display highly enough, either.



Thanks, Neurology Now.

Wednesday, April 20, 2011

Let's Speak With Our Threads During ALS Awareness Month in the U.S.!


May is U.S. ALS Awareness Month.

It is also the month when advocates will gather in Washington, DC, to take the case for increased research funding to our legislators.

We can all be walking billboards to spread ALS awareness and to show solidarity in the fight. How about adding an "ALS Is Stealing Our Loved Ones Piece By Piece" t-shirt to your wardrobe? They attract attention and they are nice quality shirts. A sea of shirts in our nation's capital or in your hometown will be a nice start on ALS Awareness Month.
Shirts are available online from the ALS Association Florida Chapter store. The price is $15 plus shipping.

It's a nice way to exercise free speech on behalf of those who can't speak. It's a great way to draw attention to ALS.

Tuesday, April 19, 2011

Here Is An Interesting Trip Down Memory Lane

Remember that on October 8, 2008, President Bush signed the ALS Registry Act into law after literally years of work by ALS advocates and organizations.



Only within the last several months some helpful documtation was added to the CDC's ALS website at https://wwwn.cdc.gov/ALS/ALSResources.aspx .



When you have some relaxing reading time, take a look at the 2009 ALS-MS Annual Meeting Summary Report - PDF file which you can also download here.

As you peruse this report that puts you in the midst of the group guiding the development of the new ALS Registry for the United States, keep in mind that the meeting was held around eight months after the ALS Registry Act had been passed. It was also held sixteen months before the ALS Registry online web portal launch.


Every month represents around 500 American deaths from ALS.

Interesting reading, eh?

Monday, April 18, 2011

We Thank Those Who Made The Case

Following is from an email from the ALS Association --

Thank you to everyone who contacted their Members of Congress urging them to support continued funding for the ALS Research Program (ALSRP) at the Department of Defense. We are excited to report that your outreach has made a difference!!!

Not only did Congress continue funding for the program, but they provided a $500,000 increase over last year! A total of $8 million has been appropriated for the ALSRP for Fiscal Year 2011. The funding was included in the budget agreed to by Congress and the President and which was just signed into law. This increase in funding is especially significant considering that Congress had threatened to eliminate medical research programs at the DOD, including the ALSRP. It is clear that your advocacy produces results!

We anticipate that the DOD will quickly begin to request research proposals later this spring and summer so that the funding can be used to advance the search for a treatment and cure as soon as possible. This year's Advocacy Conference in May also will feature a plenary session highlighting research made possible by the ALSRP.

Thank you again to everyone for their outreach. This funding would not have been possible without your advocacy! Stay Involved!

While continued funding for the ALSRP is a tremendous victory given the current fiscal climate and the efforts on Capitol Hill to significantly reduce spending, we need your continued involvement. With the FY 2011 budget now complete, Congress likely will seek to cut programs and funding in FY 2012, including medical research programs at DOD. Therefore, your continued advocacy is more important then ever! We will keep you up-to-date as the FY 2012 budget process moves forward so please keep an eye out for our alerts. We will let you know when your outreach can make the most difference. Thank you again for all of your efforts. Together, we are making a difference. Together, we are creating the roadmap that will lead to a treatment and cure for ALS.

Thursday, April 14, 2011

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.



Tuesday, April 12, 2011

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.

Tuesday, April 5, 2011

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!

Friday, April 1, 2011

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