ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, June 11, 2009

These Chicagoans Understand ALS Advocacy

Following letter was published in the Chicago Sun Times, and the Executive Director of Les Turner's knew how to amplify the message. Important information was spread in a great and big American city! Here's hoping that the Obamas read their home-town paper today.

http://www.suntimes.com/news/commentary/letters/1617739,CST-EDT-vox11.article

June 11, 2009
How much is a human life worth? According to the United States government, mine is not valued very highly.
In 2003, I began experiencing symptoms later diagnosed as amyotrophic lateral sclerosis, widely known as Lou Gehrig's disease. ALS is a progressive neuromuscular disorder that weakens and destroys motor neurons, causing paralysis and death. There is no cure or effective treatment. In the 150 years that we have known about ALS, science has unveiled few answers as to its cause or progression.
About 35,000 people in the U.S. live with ALS at any given time, including an alarming number of recent veterans. As ALS is relatively rare, I was disappointed but not surprised to find pharmaceutical companies uninterested in funding research, but was shocked how government supports ALS research compared with other conditions.
I found the National Institutes of Health spends billions of dollars for research -- the vast majority targeting preventable, treatable and non-life threatening diseases. The sample below provides perspective on how much money the NIH was willing to spend in 2008 to prevent each death from these diseases: HIV/AIDS, $198,263; substance abuse, $162,353; sexually transmitted diseases, $40,833; ALS, $7,167.
I shared my statistical analysis with U.S. Rep. Bill Foster (D-Ill.). He was impressed by the manner in which these statistics highlight inequities in NIH grant allocations and believes hard statistics help legislators make good decisions about how and where to direct federal funding.
Don't misunderstand me. The targets of NIH research dollars are deserving. However, I believe government's main role in health research should focus on basic research and on areas deemed unprofitable by private industry.
July 4 marks the 70th anniversary of Lou Gehrig's famous "Luckiest Man" speech, and many ALS awareness activities are planned to commemorate this occasion. Please help raise awareness of ALS by sharing this information with elected federal officials and the secretary of Health and Human Services.
Steven Heronemus, Batavia



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wendy abrams wrote:
On behalf of all people with ALS both past and present, I want to thank Steve Heronemus for putting the facts before the public eye. ALS was discovered in 1869 by Charcot, long before Lou Gehrig, and still today ALS research is below the radar.Steve knows only to well, the difficulties of living with ALS and we appreciate his personal help both on the national and local fronts, as Steve recently went to Sprinfield with us to talk to the General Assembly members about the need for outreach services for people with ALS.The Les Turner ALS Foundation in Chicago is the local leader in both ALS Research and patient care, partnering with Northwestern on both fronts, but ALS researchers need more funds from the NIH to truly attack this disease.5,600 hundred American's will be diagnosed in 2009 and the same number will die, 35,000 American's live with ALS every year- this has to stop. Contact your Senators now and encourage them as they prepare the NIH Budget, to increase funding for ALS research before more people are diagnosed or die.
Wendy Abrams
Executive Director
Les Turner ALS Foundation

1 comment:

  1. correction, Charcot discovered ALS in 1869.
    Sorry for the typo.

    Wendy

    ReplyDelete