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The ALS Association
Vision Express

 

 
 
  01. Letter from the President
  02. Advocacy & Public Policy
  03. Research Update
  04. How You Can Help
 
 
 

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April is National Volunteer MonthLearn how you can help.

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A Novel Immunosuppressant Regimen for the Treatment of ALS
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Letter from the President

volunteerApril is National Volunteer Month, and The ALS Association is recognizing the important role volunteers play in the lives of people living with ALS.

Since its formation in 1985, The ALS Association has been supported by a nationwide network of volunteers who continue to play a vital role in enhancing the quality of life of patients, advocating lawmakers on important ALS-related issues, and raising money to support The Association in order to find treatments and a cure for the disease through ground-breaking research.

People with ALS have unique needs. Volunteers are essential in fulfilling a variety of roles to improve the quality of life of people with the disease. Volunteers not only mitigate the financial burden on families affected but also are the lifeblood and driving force in advocating lawmakers for improved access to treatments.

Opportunities to volunteer vary chapter-by-chapter. Those interested in getting involved are encouraged to start by visiting The Association’s website at:  http://www.alsa.org/fight-als/volunteer/.

We extend our heartfelt thanks to people with ALS, their family members and friends for continually motivating and inspiring The Association and the community as we work together to find a cure for and improve living with ALS. Your courage and support is paving the way for future achievements in the fight against Lou Gehrig’s Disease.

Sincerely,

9-28-10 Match Email 2 Signature

Jane H. Gilbert
President & CEO

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Advocacy and Public PolicY

The ALS Association and MDA Urge FDA
to Help Speed ALS Drug Development

Last week, The ALS Association and the Muscular Dystrophy Association (MDA) submitted joint comments to the U.S. Food and Drug Administration (FDA) thanking the agency for holding the first ever ALS-specific public hearing on February 25, 2013 and urging them to take action to help expedite the development and approval of new treatments for ALS.

Read comments submitted to FDA.

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Congressional Legislation Will Fund ALS Research Through 2013

On Thursday, March 21, Congress passed legislation which extends funding for two vital ALS research programs. The bill, which funds the federal government through the end of the current fiscal year, September 30, 2013, will provide $6 million to continue funding for the National ALS Registry. In addition, this legislation includes a nearly 20 percent increase in funding for the ALS Research Program (ALSRP) at the Department of Defense. Read more.

Research Updates

Study Involving Injection of Antisense Molecules into Spinal Cord Area of People with Lou Gehrig’s Disease Is Safe

A study published in the current edition of Lancet Neurology finds the first-in-human trial that involves the injection of antisense molecules into the space around the spinal cord of people with ALS is safe. The ALS Association’s Translational Research Advancing Therapies for ALS (TREAT ALS™) funded this study.

“This trial is a landmark in ALS therapy,” said Lucie Bruijn, Ph.D., Chief Scientist of The ALS Association. “By demonstrating the safety and practicality of this approach, it lays the groundwork for exciting new forms of treatment of ALS.” Read full story.

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Study Published in Nature Neuroscience Finds Spinal Cord Cells That Normally Support Neurons Worsen ALS

A study just published in the scientific journal Nature Neuroscience shows cells that normally support neurons in the spinal cord instead worsen ALS in an animal model involving the disease. Researchers found that in a mouse model of ALS, caused by mutations in the SOD1 gene, oligodendrocytes degenerated before the mice displayed symptoms of the disease. When the mutant gene was removed from the oligodendrocytes, disease onset was delayed.   Read more.

How You Can Help

Leaving a Legacy - Ask the Expert

volunteerIncluding The ALS Association as part of your personal legacy by making a planned gift can feel like a big step.  To address some of the concerns you might have, we’ve put together a question and answer session. 

Q.  I want to make a legacy gift to fight ALS, but I want to make sure my children and grandchildren are taken care of, too.  Is there a way to do both?
A.  Yes.  There are many ways you can provide for loved ones and for The ALS Association.  You can make a bequest to us of a percentage of your estate or a specific dollar amount, leaving the rest to your loved ones. Another option is to make The Association a partial beneficiary of your retirement savings.  There are also gifts that can provide a lifetime income for you or your loved ones and will support The ALS Association.  Give us a call.  We’re happy to help you determine the right approach for you.

Q.  I’ve thought about including you in my will but I’m not sure my small gift will make a difference.
A.  Every gift makes a difference and is essential to our ability to continue to help people with ALS and their families.  Whatever you can give is greatly appreciated.

Q.  I’m reluctant to tell you that I’m including you in my living trust because I might change my mind.
A.  We understand that circumstances change.  One of the advantages of leaving a bequest is that you remain in control during your lifetime and can change your beneficiaries at any time.

Q.  I want to make a bequest to fight ALS, but my will is already written, and I don’t want to go to the expense of having it re-written.
A.  A codicil is a document that amends, rather than replaces, a previously executed will or living trust.  It’s easy to do and costs relatively little.  You can find a sample codicil on our website in the section on Bequests.

Q.  What should I do next?
A.  Let us know if you need assistance or if you have already included the The ALS Association in your estate plans.  We would like to say “thank you” and to welcome you into our Legacy Society, a group of individuals who have expressed their long-term commitment to fighting ALS by making a gift in their estate plans.

Please contact our office for more information about estate planning or making a legacy gift.

 


Vision Express is a companion to The ALS Association's national publication, Vision Magazine.

The ALS Association
1275 K Street NW - Suite 250 - Washington, DC 20005
Phone (202) 407-8580     www.alsa.org
 

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