The entire ALS community (including ALSA and MDA) has NOT been successful with NINDS in negotiating the kind of money we need to cure this fatal disease.

While other diseases get Billions for research ALS gets $15 Million. While private contributions add to that number, Alzheimers gets $562 Million, Parkinsons $225 Million etc.from NINDS. Where is the social justice for ALS sufferers?

This is the worst form of descrimination!

My proposal is based on these facts- first, the Government is culpable in that this underfunded fatal disease kills 6,000 people each year since its diagnosis almost 140 years ago and second, this is the age of the "buyout"-from Chrysler to Airlines and if President Bush has his way, Enron employees, and lastly, Gulf War veterans suffer from ALS at twice the rate of the U.S. population.

FATAL ORPHAN DISEASE SUFFERERS BILL

The Federal Government shall pay the estate of all people who die from a fatal orphan disease(diseases which effect 200,000 people or less) which have no known cause or cure,and have been diagnosed for over 100 years, the sum of $1.6 Million dollars(figure given as part of airline bailout bill to people who lost their lives in 9/11 terrorist attack) for education of caregiver,and other relatives to insure their successful rentry to the job market, to pay for medical expenses not covered by Medicare/Caid, to pay for funeral expenses and to provide for day to day living expenses for the deceased's family.

(this proposal has been submitted to ALSA for ALS Advocacy Day in May, 2002 and will be discussed by 30 chairpersons of chapter ALS Advocacy Committees and Steve Gibson,lobbyist for ALSA)

Ken O'Donnell
Advocate for a cure for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease)
Phone 314-993-4181 or 314-749-4918
ken@rideforlife.com