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Columbia Missourian

LETTER TO THE EDITOR: Contact representatives about funding ALS research

By Maureen Barber-Hill
July 26, 2012 | 6:00 a.m. CDT

I am writing to encourage Missouri and Illinois residents to help play a role in advancing research for a cure for ALS, amyotrophic lateral sclerosis. ALS is a fatal disease that robs the body of voluntary muscle control until the simple act of breathing becomes impossible. This devastating illness strikes without warning, and unfortunately to this day, there is no cure or treatment. It is estimated that as many as 30,000 Americans, many here in our own community, may be courageously battling this disease.

The ALS Association St. Louis Regional Chapter is dedicated solely to the fight against ALS by improving the quality of life for those affected by ALS, educating the community and advancing research efforts.

We can make a remarkable difference with the continued help of ALS advocates urging Missouri and Illinois representatives to co-sponsor the MODDERN Cures Act of 2011 (HR 3497) and urging our senators to continue funding $10 million for the ALS Research Program at the Department of Defense and $10 million for the National ALS Registry at the Centers for Disease Control and Prevention to find a cure.

Though Congress has begun to make a concerted effort to help fight against this disease, about $10 million dollars is needed to continue the National ALS Registry.

This act, passed in 2008, made ALS patient registry a top priority by allowing patients to do self-enrollment online and to collect data with the goal of identifying the causes and potentially find a cure for this disease. However, further funding is necessary in fiscal year 2013 to continue the registry and collect additional information about ALS cases.  

You may contact your senators and representatives through the ALS Association's Advocacy Action Center. Working together, we can be victorious in fighting ALS and ultimately save lives. Thank you for your time and consideration. By making our leaders more aware of ALS and the toll it takes on the lives of their constituents, the more likely they will provide support for the funding of the ALS Registry and the ALS Research Program.

Maureen Barber-Hill is president and CEO of the St. Louis chapter of the ALS Association. Questions? Contact Opinion editor Elizabeth Conner.