BY ERIC BAKER
Boomerang Staff Writer

Katy Hinckley and Peter Hegg were two of over 600 people who descended on Washington, D.C., last week to show solidarity for Amyotrophic Lateral Sclerosis (ALS) research and push for more funding.

“Advocacy Day” was an event designed for ALS patients and caregivers to meet with legislators to help make research funding a budget priority. Though much more is known about the disease today, the prognosis for a patient diagnosed with ALS in 2005 is the same as it was when the disease was first identified in 1869: death in two to five years.

Hinckley was diagnosed with ALS, also called Lou Gehrig’s disease, five years ago. She said the disease is affecting her speech and respiration, but Hinckley has already reached the optimistic projection.

“The disease is very difficult to diagnose,” said Hinckley. “It’s almost diagnosis by elimination based on the symptoms.” Doctors needed 14 months to diagnose Hinckley after her first symptom.

“We fight public awareness about ALS as much as the disease itself,” said Colleen Maguire, director of patient services for the ALS Association. “That is why Advocacy Day is so important.”

“The day was very, very tiring, but I think it was worthwhile,” said Hinckley. “We got to meet with (Rep.) Barbara Cubin and (Sen.) Mike Enzi, and I believe they will support us in the future. I also got to network with other patients and caregivers.”

Researchers still do not know what causes the disease, and how it can be prevented, treated, or cured. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, and the symptoms include muscle weakness, especially in the arms and legs, slurred speech and difficulty breathing. Doctors typically rule out other diseases before they diagnose someone with ALS, because no neurologist wants to tell a patient they have a fatal disease, said Maguire.

One major finding has been that veterans are at a 60 percent higher risk of developing ALS than the general population. This fact has allowed the ALS Association to pressure the Department of Defense for more research on just why veterans are so vulnerable. It led to the creation of a federal advisory committee by Congress in 1998. Their report, released last year, called for Congress to set a national goal of finding treatments for illnesses affecting Gulf War veterans within five years.

ALS is a disease that can strike anyone, and ALS occurs two-thirds more frequently than multiple sclerosis. The age range of onset is 45 to 75, but the average age has been creeping earlier in life as physicians learn more about the disease.

This is the eighth year for Advocacy Day. In that time the ALS Association has procured an immediate Medicare waiver for ALS patients, while the typical patient has to wait two years to receive benefits. With the prognosis of ALS, many do not have that long. The association also made ALS classified as a presumptive disability, which means that once a patient is given a diagnosis of ALS, they can receive disability pay from Social Security.