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The ALS Association
Vision Express

 

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

 

 
 
 

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Discussing ALS
With Children

Few tasks can be more difficult than discussing the effects ALS will have on a parent or family member who is diagnosed with the disease. Read more. Read more.


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C9ORF72 – the role of RNA
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Letter from the President

permobilWe are dedicated to the people living with ALS and their families in our area. We know you are too. Although there are many ways to support the work we do, there is an incredibly quick and easy way to fight ALS every payday.

By giving through payroll deductions, you are taking your partnership with us to the next level. You can contribute to The ALS Association through Community Health Charities (CHC), a federation of premier health organizations that have joined together to raise charitable contributions in the workplace. Your gift will not only fund The ALS Association's care services programs, but also The Association's global ALS research endeavors and public policy efforts.

To find out how you can participate in the CHC workplace giving program, please visit our website. Your gift, no matter how large or small, will have a profound impact on people living with this disease.

Sincerely,

9-28-10 Match Email 2 Signature

Jane H. Gilbert
President & CEO

FEATURE STORY

NEMCO-JRR teams up with The ALS Association to
Drive for Lou Gehrig’s Disease

NASCAR racing team, NEMCO-JRR, donated space on their #70 Nationwide Series Car and their #87 NASCAR Sprint Cup Series in an effort to increase ALS awareness at Atlanta Motor Speedway this past Labor Day weekend. The No. 87 Toyota was driven by Joe Nemechek in the Sprint Cup AdvoCare 500 and the No. 70 car was driven by Tony Raines in the Great Clips/Grit Chips 300 Nationwide Series race.

"We are thrilled to partner with The ALS Association,” said driver Joe Nemechek. “We hope the awareness generated through this partnership will have a tremendous impact on the organization and the patients and families whom it serves."  Please click here to read the full press release.

ADVOCACY AND PUBLIC POLICY

New ALSRP Video

We wanted to share with you this video that features The ALS Association's Chief Scientist, Dr. Lucie Bruijn, speaking about the ALS Research Program (ALSRP) at the Department of Defense and the vital role it is playing in the search for a treatment for ALS. In the video, Dr. Bruijn highlights several potential treatments that have been made possible by ALSRP funding.

The continued success of the ALSRP is the direct result of the efforts of people with ALS and other ALS advocates to share their stories with Members of Congress and urge them to continue funding for the program. In July, the House of Representatives voted to provide $7.5 million for the ALSRP next year, which, if enacted, would bring total funding for the program to nearly $50 million. Watch video.

The National ALS Biorepository Pilot Study

If you are living with ALS and have enrolled in the National ALS Registry, you may volunteer to participate in the National ALS Biorepository Pilot Study. This is an important research project that is collecting blood and tissue samples in an effort to see how and whether the Registry can create a biorepository.

Participation in the study is free of charge and easy to do. Simply call or email study coordinator Laurie Wagner at lwagner@mcking.com or 1-855-874-6912 if you are interested in participating. A home visit then will be scheduled and a researcher will come to your home to collect samples.

We hope that you will consider participating in this important study. Your participation may help researchers strengthen the Registry through the creation of a biorepository that could be linked to information already in the registry. This new feature could be a very powerful tool that can help advance ALS research and identify what causes ALS and potentially how it can be treated. Moreover, this study is examining other existing ALS biorepositories in order to avoid duplication and identify gaps that a National biorepository could address.

Additional information about the study, including fact sheets and answers to frequently asked questions, is available here: http://wwwn.cdc.gov/als/ALSBioRegistry.aspx.

Research updates

The ALS Association Announces $4.3 Million
in Research Grants for Global Fight Against ALS

The ALS Association announced today that it has awarded $4.3 million in new research grants. These awards are part of its Translational Research Advancing Therapy (TREAT ALS) program, through which The Association funds a diverse portfolio of amyotrophic lateral sclerosis (ALS) research to find treatments and a cure for the disease. "These awards will drive research on several emerging fronts in the quest to understand and find treatments for ALS," said Lucie Bruijn, Ph.D., Chief Scientist for The ALS Association. "The generosity of our donors and supporters makes these grants possible. We are very grateful for that generosity and the opportunity it provides to make these awards for this important research." Click here to read the full article.

How You Can Help

Looking for Some Security?
Income for You & A Gift to Fight ALS

Who isn’t looking for security these days? In these uncertain times, many ALS Association supporters are looking for a stable source of retirement income. As a result, they are increasingly turning to Charitable Gift Annuities as a solution. Charitable Gift Annuities really are quite simple. You make a donation to The ALS Association (our minimum is $10,000) and we make fixed payments to you for the rest of your life - at attractive payment rates that are guaranteed.

If you desire . . .

  • A secure, fixed income for the rest of your life
  • Tax advantages and a charitable deduction for your gift
  • To provide for the financial security of a loved one family or friend
  • To make a donation, the remainder of which supports the fight against ALS

. . . a Charitable Gift Annuity may be right for you.

To receive a free personal illustration showing your payments and tax savings based on your exact age and gift amount, please contact us.

 


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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