In this issue:

• Letter from the Executive Director
• Special Announcement
• Advocacy and Public Policy
• Research
• How You Can Help
• Local Highlights

Letter from the Executive Director

New Postal and Online Communications Partnership
 

 The ALS Association Minnesota Chapter is participating in an exciting new collaboration with other chapters and the national headquarters of The ALS Association for some of our postal and online communications to our constituents. These letters and emails are not only to encourage your ongoing and generous financial support, but also to keep you informed of our progress and of the impact our organization has on those living with ALS and their families.

Similar to past communications, we will continue to inspire you with personal stories that help to illustrate how important your support is to sustain our patient services programs and our ALS research efforts. The most significant change with the new mailings is that gifts are now mailed to a central processing center in Colorado. Your contributions still go to support The ALS Association Minnesota Chapter. Processing your gifts in one central location helps to keep costs down and allows us to direct more funds to providing support and resources to our local ALS community.

You may have already received communications from us as part of this partnership in January and March. In the coming months, we look forward to keeping you informed of recent accomplishments and breakthroughs.

If you no longer want to receive these periodic communications from us, please contact us to be removed from our mailing list. You may use the unsubscribe link at the bottom of each email to discontinue receipt of those messages.

Thank you again for everything you do to help us create a world without ALS. We look forward to being in touch throughout the year.

Sincerely,

Sue Spalding
Executive Director
The ALS Association Minnesota Chapter - Now Serving North Dakota

Special Announcement 

National Volunteer Recognition Month
 

April is National Volunteer Recognition Month and it gives me great pleasure to acknowledge our extraordinary volunteers who help make the work of The ALS Association Minnesota Chapter possible.

Our volunteers provide invaluable assistance in the office; help coordinate the Walk to Defeat ALS™; advocate at The ALS Association’s National Advocacy Day and Public Policy Conference and devote their time and energy so that we are able to provide the essential patient and family support services.

Thank you to each and every volunteer — the commitment you have made to those living with ALS is immeasurable. Your unwavering support plays a significant role in all of our successes and milestones.

Please join our team of volunteers and help lead the fight against ALS.

Advocacy and Public Policy 

Join us for the 2010 National ALS Advocacy Day
 

Have you registered to attend the 2010 National ALS Advocacy Day and Public Policy Conference May 9-11 in Washington, DC?   If you plan to join us in the nation's capital, please register and reserve your hotel room TODAY!  The deadline to receive reduced registration and hotel rates is Friday, April 9, just a few weeks away.

Your participation in the Advocacy Conference is needed to help make a difference in the fight against ALS.  Successes like establishing an ALS registry, securing more than $400 million in funding for ALS research, and eliminating the 24-month Medicare waiting period could not have been accomplished without the efforts of individuals who have participated in Advocacy Day.  However, the ALS community needs your help today more than ever.  So please plan to join us in Washington this May!

For more information on the conference, please click here.

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National ALS Registry: March Update and Timeline
 

Thanks to the outreach of advocates across the country to secure $6 million in Congressional funding for the National ALS Registry in 2010, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is preparing to fully implement the National ALS Registry later this year.  In fact, every person with ALS in the country is expected to be able to self enroll in the registry this year via an online web portal and provide information that will help to advance the search for a cause, treatment and cure for ALS.

In the meantime, The ALS Association is working closely with the CDC/ATSDR to take the steps that are necessary to fully implement the registry as soon as possible.   Several vital activities will be taking place in the coming months and we are pleased to share with you a timeline that outlines what will be happening. 

Click here  to read more about this important update.

Research 

First ALS Patient Receives Isis-SOD1_RX Antisense Treatment in Phase 1 Clinical Trial

The ALS Association is pleased to announce that we have partnered with Isis Pharmaceuticals, Inc. to initiate a clinical trial of ISIS-SOD1Rx in patients with an inherited, aggressive form of ALS. Approximately 20 percent of all familial ALS cases are caused by a mutant form of superoxide dismutase, or SOD1.

ISIS-SOD1Rx is the first antisense drug designed to inhibit the production of SOD1. Antisense techniques are used to deactivate disease-causing or undesirable genes so that they cannot produce harmful or unwanted proteins.

Please click here to read more about the ISIS-SOD1Rx clinical trial.

How You Can Help 

Help Your Favorite Baseball Team Fight ALS