Thursday, March 31, 2011
Wednesday, March 30, 2011
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 firstname.lastname@example.org or 1-877-444-ALSA. Thank you!!
Saturday, March 26, 2011
Thursday, March 24, 2011
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
Tuesday, March 22, 2011
Saturday, March 19, 2011
Friday, March 18, 2011
Wednesday, March 16, 2011
See last year's trip report.
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).
Tuesday, March 15, 2011
Friday, March 11, 2011
Wednesday, March 9, 2011
This morning there is a wonderful feature on people with ALS for the entire nation to see...
Sunday, March 6, 2011
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
This story should be required reading for every American!
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.