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HELP for the afflicted, HOPE for their families

Boring restaurant is the venue for a benefit for ALS patients, research


by: JIM HART - Family members from the Cloud Cap Holstein dairy in Boring have a little fun, while a 4-month-old Holstein calf gets a little TLC. Pictured, from left, are the late Arnold Moore, Jr.'s daughter, Linda Parker, and Moore's granddaughters, Beth Sherer and Meagan Lancaster. A lifelong Boring resident, Moore died of ALS in 2004.Meagan Lancaster remembers with sadness a few months of her life when she was in her early 20s.

At that time, no one could do much to relieve her grandfather’s distress as the Boring family watched his quick decline.

Lancaster and her family managed his disease symptoms and could only watch for eight months while Arnold Moore Jr. went from a towering 6-feet-5 Swiss dairy farmer, who worked from 3 a.m. to dark, to a person who had no control of his muscles and soon had no ability to even move his diaphragm and breathe.

Moore, who had been a pillar of the Boring community his entire life, died in early 2004 from the symptoms of a disease that was not diagnosed until after his death. On the last day of his life, Moore’s doctor sent him to the hospital to see if he needed treatment for pneumonia.

No, he didn’t.

On that day, Moore was separated from his family by a disease called ALS — amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease.

Curing the incurable

That’s when Moore’s family members became involved in seeking a cure for what is often called an incurable disease. Lancaster prefers to say the cure hasn’t yet been found.

Lancaster became so involved that she has participated in fundraisers for ALS every year since 2005 — so involved that she became events coordinator and then fundraising manager for The ALS Association Oregon and Southwest Washington chapter.

In their first involvement, Lancaster and her sister, Beth Sherer, formed a small team of supporters they called “Arnold’s Armada” and joined a fundraiser that now draws at least 6,000 people to six cities in Oregon and Southwest Washington in September each year.by: CONTRIBUTED PHOTO - The support for ALS families and research to find a cure is easily seen in this sea of thousands of faces along the East Bank Esplanade in Portland during a recent fundraising walk.

That activity is “The Walk To Defeat ALS®,” a fundraiser to support ALS patients and their families as well as fund research to find a cure.

Moore’s daughter, Linda Parker, along with Sherer and Lancaster, all lament the fact that no cure or treatment has been found — not even a reason why people are afflicted.

“Even with the research, there’s still no reason why a person contracts this disease,” Sherer said, “and that’s why we keep walking.”

Help from Boring

Last year, as one of the fundraisers that added to the Arnold’s Armada donation for the ALS walk, Sherer and Lancaster organized an event they called “Cure-a-oke.”

The event’s games, similar to karaoke, were held at the Timber Pub and Grub in downtown Boring, and funds went to ALS when people ordered food or drinks at the tavern or played the games.

This year’s event at the Timber Pub and Grub is set for the evening of Saturday, Sept. 22. Dinner starts whenever people arrive and the games begin at 8 p.m.

“It’s a fun way to support a cause,” Sherer said. “ALS is a pretty scary diagnosis, and it’s nice to have fun while raising money for something so heavy.”

Through this and other fundraisers, Arnold’s Armada, now numbering about 30 people, will contribute significantly to the approximately $465,000 expected to be raised in Portland when about 4,000 people participate in the 3-mile walk Sunday, Sept. 30.

Support growing

The people who walk across the bridges and around Portland each September are family members and friends of families dealing with an ALS patient, but those who contribute to the cause come from every walk of life.

The number of people offering support is growing, Sherer said, with only a few hundred the first year Arnold’s Armada joined the walk. By 2009, there was a crowd of walkers numbering about 2,500. This year should exceed 4,000, filling both bridges and the connecting streets.

“There’s a lot of camaraderie at the walk,” Sherer said. “Some of us know what the others are experiencing. They don’t need to explain it; we just know.”

Hope amid grief

At any given moment in Oregon and Southwest Washington, according to information from the ALS Association, there are about 500 people dealing with ALS (30,000 across the United States).

Those numbers don’t seem to change much — across the country, someone dies from the disease every 90 seconds, and during that same time period another person is diagnosed.

“The hardest thing (to accept) about this disease,” Lancaster said, “is there are new people being diagnosed all the time for absolutely no reason that we’re aware of.”

The number diagnosed hasn’t dimmed the hope anyone can see when they look into the eyes of Lancaster or Sherer. The two young women are positive about the future, and tout the accomplishments of 10 years of the local ALS Association’s work.

Breakthroughs in the past three years include a revelation that people in the military are more likely to contract the disease — whether active or not, whether overseas or not.

A more recent discovery is the fact that a bio-marker can be used to diagnose the disease much earlier through a simple blood test.

An earlier diagnosis means an ALS-affected family will not have to go through the months of not knowing what is causing their family member’s decline; they’ll have more time to apply treatments to improve quality of life; and they’ll have more time to access assistance for what essentially is a family disease.

Assistance takes the form of practitioners in a Providence Health Services clinic, support groups for patients and caregivers, education for newly diagnosed patients and their families, respite care of patients to give caregivers a break and funds for research into causes and treatments for ALS as well as devices that assist in the daily life of patients such as walkers and shower chairs, even beach wheelchairs.

Another breakthrough is the discovery of a drug that essentially extends an ALS-afflicted person’s life by three months.

“Besides this one drug, there’s really nothing (to use in treatment),” Lancaster said.

Even though Lancaster likes the work she’s doing for the ALS Association, she would really like to be out of a job, because that would mean a cure had been found.

“This (work) is something that is close to my heart,” she said, “and I want to drive home each day thinking I’ve made a difference.”