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 16, 2011

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!

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