For the Week of March 5, 2013

ALS Association-Funded Researchers Find Connection Between ALS and Other Diseases

This week’s research update, which contains research published in the scientific journal Nature, details how gene mutations cause ALS and other brain, muscle and bone diseases. The ALS Association's TREAT ALS™ program funded this study.

2013 Minor League Baseball Partnership

2013 Minor League Baseball Partnership Opening Day for baseball is only a month away. Join the Public Policy Department for a conference call on Thursday, March 7, at 3 p.m. ET to learn about the "Tribute to our Military Heroes" campaign with Minor League Baseball. Information for the call available here.

NEALS/ALS Association Research Webinars

Topic: Benefit-ALS: The Phase IIB Clinical Update of Tirasemiv in ALS
Date: March 12, 2013
4 p.m. ET
Presenters: Jeremy Shefner, M.D., SUNY Upstate Medical University and Jinsy Andrews, M.D. Cytokinetics, Inc.
Register here.

Topic: Clinical Trial Pipeline Series
Date: March 27, 2013
4 p.m. ET
Presenter: Merit Cudkowicz, M.D., Massachusetts General Hospital
Registration information available soon

ALS Association Research Webinar

Topic: Telehealth Program for the Integrated Care of Patients with ALS
Date: March 26, 2013
4 p.m. ET
Presenter: James Berry, M.D., MPH, recipient of the Richard Olney Clinical Research Fellowship Award, from Massachusetts General Hospital in Boston, Mass.
Register here.

Assistive Technology Webinar

Topic: Adequate Nutrition and Feeding Tubes in ALS
Date: March 25, 2013
2 p.m. ET
Session number: 828 509 711
Session password: Attopicmarch2013
Log in

Care Services Chapter Staff Orientation Conference Call

New Chapter Care Services Staff
Date: March 7, 2013
Noon ET
Open to all new or existing chapter Care Services staff or other chapter staff designated by chapter Executive Directors/CEOs. Please contact Cynthia Knoche, Director, Chapter Care Services, to receive direct access to this WebEx call. 

LUMINATE (CONVIO) TRAINING

Topic: Dashboard Report Completion
Date: March 7, 2013
1:00 pm ET
Log in 

ALS Registry Toolkits Conference Call

As your chapter starts to prepare to use the National ALS Registry Toolkits, the Public Policy Department will host a conference call on Wednesday, March 6, at 2 p.m. ET to discuss how your chapter can best implement and use the toolkits.  Please contact Mark Murtagh or 202-407-8591 with any questions regarding the call.

Quarterly Finance Reports Due

The Association recently sent a reminder about the quarterly report for 01-31-2013 due March 1, 2013 as well as chapter budgets for FYE 2014. Affiliates should send the quarterly reports no later than March 11, so the National Office can prepare its year-end for their audit starting March 25. Chapter budgets were due January 1, 2013. Any questions concerning these reports should contact the Finance Department in California.

Walk to Defeat Progress Report

We are pleased to continue sharing the Walk to Defeat ALS® Progress Report with you. This report breaks each chapter into Walk sites and Market Groups and compares 2012 Walk numbers to 2013 Walk numbers, Year to Date.

FDA Holds ALS-Specific Public Hearing

The FDA is still accepting comments for the ALS-specific hearing until March 25, 2013.  Comments may be submitted electronically via regulations.gov at http://tinyurl.com/aa9ln7r. The webcast of the hearing is now online at the FDA’s website. The agency also will post the transcript of the hearing to their website in the coming weeks.

Registration Open for the 2013 National Advocacy Day & Public Policy Conference

Registration for the 2013 Advocacy Day and Public Policy Conference is now open! Please visit our website to view the conference brochure and register to attend. Remember that you need to contact Mary Wisniewski or 202-746-0043 to request an ADA-accessible hotel room.

Archived Care Services Webinar

You can now access the recording for the webinar “Brain Computer Interfaces: Future technology that may assist people with ALS with communication and other tasks” via this link or The Insider.

March Email Tagline

Here's this month's suggested e-mail tagline: Have you signed up for The Exchange, our monthly Care Services newsletter that discusses clinical care for people living with ALS? Register here to receive this monthly e-newsletter.

Chapters: Feel free to substitute the link for your monthly newsletter, Connections.

Need help to add this to your email signature? Review these instructions.

What's the Cost of Out of Date Donor Data?

Check out this interesting article from the Nonprofit Technology Network, “The Cost of Out of Date Donor Information.”

Names Needed for NFL Partnership

We are taking the first steps toward building a partnership approach with the NFL and are compiling a list of NFL players who have or had ALS as well as looking for connections with teams, coaches, owners, or other football contacts. This would be for internal reference only, for use in Association-wide strategic planning, and not for public distribution. Please forward any names/info to Leigh Ann Cardenas. 

Reminder: Customize 2013 One Dollar Difference TeamRaisers

For those chapters that have yet to customize your 2013 One Dollar Difference TeamRaiser, please use the Go Live checklist to make your updates. Once the customizations are completed, please send Laurel Rosenthal an email to review your site. If you have any questions, please contact Laurel or review the One Dollar Difference Training call.

Attention Direct Mail Chapters

Deadline to submit deceased names for April Renewal is TUESDAY, MARCH 12.

2013 Foundation Directory

It’s time to renew your subscription to the Foundation Directory! Deadline is March 22. Click here for more information.

National Severe Weather Preparedness Week

March 3 - 9 marks National Severe Weather Preparedness Week, which is timely considering the Midwest and Mid-Atlantic states will probably be under several inches of snow during the next few days. Review this link and share it with your external constituents via your chapter's social media outlets.

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