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The ALS Association
Vision Express

 

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

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Lawrence R. Barnett Leaves a Legacy of Leadership and Caring.
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FDA Bill to Accelerate
New Treatments for ALS!

The U.S. Senate recently voted to reauthorize the Prescription Drug User Fee Act (PDUFA), legislation that includes a number of vital reforms and resources that will help to speed access to new treatments for people with ALS! The bill now heads to the President, who is expected to sign it into law.

The ALS Association has strongly supported PDUFA, having worked with Congress, FDA and others for more than a year to speed its enactment. The bill is an important victory and includes provisions that will:

  • Improve and strengthen FDA's Fast Track and Accelerated Approval processes to speed the approval of drugs to treat ALS and other serious and life threatening diseases;
  • Provide the FDA with the flexibility to approve new treatments quicker by utilizing tools such as biomarkers and other surrogate endpoints that can predict whether a treatment is effective much earlier in the drug development process;
  • Help to ensure that ALS experts can participate on FDA advisory panels;
  • Direct FDA to facilitate the development of breakthrough treatments by working more closely with companies and patients throughout the drug development and approval process;
  • Reauthorize the Orphan Drug Grant Program, which provides funding to encourage the development of treatments for rare diseases like ALS;
  • Require FDA to work closely with patient organizations, including those representing rare diseases, as it develops guidance and regulations; and
  • Provide much needed funding and resources to the FDA which will help the Agency to expedite drug approvals.

Sincerely,

9-28-10 Match Email 2 Signature

Jane H. Gilbert
President & CEO

PUBLIC POLICY

Senate Committee Approves $6 Million for ALS Registry!

The Senate Appropriations Committee approved an additional $6 million to continue the National ALS Registry. This action comes just a few weeks after ALS Advocates held hundreds of meetings on Capitol Hill during The Association’s National ALS Advocacy Day. It is clear that those meetings made an impact. Thank you to everyone who participated in D.C. and online through our virtual advocacy day.

This victory is only one step in the process to ensure that the National ALS Registry continues to be funded. Next, the bill will be voted on by the full Senate and then will go into conference with the House of Representative’s version of the bill. We will keep you updated on the process and let you know when your outreach to your Members of Congress will be most effective.

Thank you for your continued support in the fight to defeat ALS!

Research Update

The ALS Association Renews Funding for
TREAT ALS™/NEALS Clinical Trials Network

The ALS Association is pleased to announce renewal of long-term funding for the TREAT ALS / NEALS Clinical Trial Network, in association with the Northeast ALS Consortium (NEALS). “This has become a centrally important partnership in ALS clinical trial development,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D. “This renewal will allow this vital work to not only go forward but also to accelerate.”

Click here to read the full article.

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New ALS Research Involves TDP-43, Motor Neurons, Other Findings

Reducing expression of TDP-43 increases the level of SOD1, according to new research funded by The ALS Association. The finding highlights a previously unknown molecular link between two genetic causes of ALS and may lead to a better understanding of disease pathogenesis. Mutations in the TDP-43 gene are a rare cause of familial ALS, and the TDP-43 protein is found in protein aggregates in most forms of ALS, both familial and sporadic. The normal TDP-43 protein helps process RNA in the cell. It is not yet known how mutations in TDP-43 cause ALS.

Click here to read the full article.

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ALS Research Journal News - June 2012

A summary of some of the most recent advances in ALS research.

Anti-SOD1 Immunization Delays Onset, Increases Lifespan in ALS Mice

Immunizing ALS mice against the mutant SOD1 protein delays disease onset and increases lifespan, according to research funded by The ALS Association and published this week in Journal of Neuroscience. “This study supports previous data demonstrating the potential of immunization as a treatment strategy,” commented Lucie Bruijn, Ph.D., Chief Scientist for The ALS Association, “and furthermore describes the exact binding domain of the antibody on the mutant protein.”

Click here to read full article.


How You Can Help

Step Up to the Plate… Meet the Match

CATB-email-button.pngDuring the month of July, The ALS Association is teaming up with Major League Baseball for the 4♦ALS Awareness initiative, a campaign to rally support in the fight against Lou Gehrig’s Disease. Baseball clubs across the country are uniting throughout the season to bring public attention to ALS, a disease that touches thousands of people and is in dire need for a treatment and cure.

Want to join the team? You can by participating in the Covering All the Bases Hitting Challenge and making a pledge that will support care services, cutting-edge research, and advance public policy efforts on Capitol Hill. Every “hit” made in the Covering All the Bases Hitting Challenge will be matched by PostNet International up to $25,000! By joining the team, your gift will have double the impact on the services and programs provided by The ALS Association.

postnet.pngWhether you hit a single, double, triple or home run, every run brings us closer to a treatment and cure for Lou Gehrig’s Disease. Together, we will create a world without ALS. Thank you for supporting the fight against ALS. Please extend your support by passing on this message to friends and family.

 

 


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

The ALS Association
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Phone (202) 407-8580     www.alsa.org
 

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