MOUNT VERNON — For Marilyn Leer, it all started with a twinge in her thigh.

“It just felt different,” she said. “Walking up stairs or running, it just didn’t feel normal. I really didn’t give it much thought. I really didn’t think about what it was or what it could be.”

That twinge, however, persisted. Months later, Leer, a nurse at St. Joseph Hospital in Bellingham, decided she needed to see a doctor. The diagnosis was that the 45-year-old Leer was suffering from some sort of nerve damage.

Both she and her husband of 24 years, Jeff, believed they had dodged a bullet.

You see, a disease has stalked Marilyn Leer’s family for years, claiming the lives of nine family members.

As time went on, it became apparent the Leers hadn’t dodged that bullet.

“We were told (originally) by a doctor that is was a nerve injury following a surgery I had,” said Marilyn Leer. “So I went to rehab. After a while, my physical therapist noticed I wasn’t getting any stronger. In fact, I was getting weaker. That’s when we first found out something was really wrong.”

The disorder that has afflicted so many in her family had found her.

The disease that crept into Marilyn Leer’s life is amyotrophic lateral sclerosis. She was diagnosed with it in September.

“I had put it in the back of my mind,” said Marilyn Leer, “and prayed a lot that I wouldn’t get it. I believed for a long time that I was not going to get it. But as time went on, I started thinking about the possibility more and more.”

In a matter of months, she went from being able to ride a bike, run and play tennis to being in a wheelchair with the use of only her right arm.

“It doesn’t affect as many folks as, say, cancer,” said Jeff Leer. “But it takes so much away. Marilyn used to be able to walk, but now she can’t. She’s in a wheelchair. It’s taken so much away.”

Her particular type of ALS, called familial ALS, is aggressive.

“This type is inherited,” said Marilyn Leer. “It attacks the body much faster. My brother’s attacked his respiratory system. Most of the time, it attacks the limbs first. That’s my situation. You start with just this weakness in your limbs and then comes clumsiness in your hands and feet.

“My grandmother died from it in 1972. I was quite young. She was the first person to get an actual diagnosis. My mom was diagnosed in 1991 (and died in 1992). By then, I was a young adult and I was thinking, ‘Oh no,’ this could be genetic. Then four years later, my brother and uncle were diagnosed. That’s when myself and my three sisters started having real concerns.”

There is no cure for ALS, however, extensive research on it continues.

“You try not to focus on it,” said Marilyn Leer. “You can worry yourself into oblivion over it. What’s important is having a strong faith, a strong family and a strong community. We have had so much support. The community, our church has been so much help.”

Research into ALS is expensive.

Toward that end, the Evergreen Chapter of the ALS Association is sponsoring the Ninth Annual DoubleDay Bike Ride and Fundraiser on July 25-26 at Mount Vernon High School. The two-day ride will cover 85 miles — and two optional loops covering 14 miles — as riders pedal under the banner “Nothing less. Cure ALS.”

For more information on the event, go to http://webwa.alsa.org and click on ALS DoubleDay 9 Bike & Fundraiser.

“It just continues to grow,” Jeff Leer said of the event. “It was held at the school in Conway. We outgrew it. Now we are over 200 riders.”

“The Evergreen Chapter works with local patients and families on how to live with ALS,” said Stephen Burwell, planning committee member. “It currently supports about 175 ALS patients in Western Washington.”

The first day’s ride, called the “Valley of the Tulips,” covers 43 miles. Day two, known as the “Land O’Lakes” covers 42 miles.

“The event is very well run,” said Jeff Leer. “At the end of the first day, there is a very cool dinner that evening. The second day is definitely harder than the first. Everyone has to get up and get their sore butts back in the saddle and do it again. It’s all for a very important cause.

“The fact that I know my wife would love to be out here with me makes it easier for me. She keeps me going.”

The ALS DoubleDay was started in 2000 as the Ride 4 Life by ALS patient and bike enthusiast Mark Reiman of Mount Vernon.

Reiman was inspired by a group that started the Ride 4 Life in New York, where ALS patients rode their wheelchairs from New York City to Washington, D.C.

Having never heard of a bike ride for ALS, Reiman, with the help of former Mount Vernon High School classmates, organized a ride to raise awareness and funds in the fight against ALS in the Skagit Valley.

Changed to the ALS DoubleDay in 2001, the ride has grown each year. It has raised about $737,000.

Reiman died in 2003.

Last year’s ride boasted 257 riders and raised about $146,600.

“This year, an expected 300 riders will take part,” said Burwell.

“It’s great to know we are helping out,” said Marilyn Leer.

Jeff Leer is a member of “Marilyn’s Army,” which boasts 12 riders. There’s even a “Marilyn’s Army Too,” also with a dozen members. A year ago, Marilyn’s Army had three riders.

In 2007, Jeff and Marilyn Leer rode in their first DoubleDay ride. Jeff Leer has ridden in every ride since.

“It’s a lot of fun being involved,” said Marilyn Leer. “It gives people a chance to get together and have their friends involved.”

ALS attacks upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. By destroying nerve cells that control muscles, it causes paralysis and ultimately death in an average of three to five years.

“Obviously, it can be a very scary process,” admitted Marilyn Leer. “I can’t cut up my own food. I can’t get myself ready for bed. Honestly, though, because of all the support I get from family and friends, I still have a great quality of life.”

There is a DNA test for the presence of the ALS gene. Marilyn Leer declined to have the test years ago.

“There was nothing I could do with that information,” she said, “but worry about it.”

After symptoms persisted after the first diagnosis, the Leers headed to Seattle’s Virginia Mason Hospital, which has an ALS clinic. Marilyn Leer had the DNA test there.

“The test came back positive with the specific SOD1A4V (gene),” she said. “There was an 87 percent chance with that mutation that you have the disease. My sisters have still declined the test.”

As have the Leers’ two children, 20-year-old Lauren and 17-year-old Brian.

“Lauren has said once she decides to get married and possibly start a family, then she will get the test,” said Marilyn Leer.

“We’ve got to find a cure so the kids don’t have to worry about this disease.”

The disease doesn’t have the notoriety of, say, cancer, and therefore money for research tends to be harder to come by. That is beginning to change. Further tests are on the horizon and there are medications that show promise.

“There is certainly hope out there,” said Marilyn Leer. “In the meantime, you have to rely on your support group. Jeff and the kids are great. My daughter comes home and reads to me. My parents (father and stepmother), who live in Port Angeles found an RV pad just a mile and a half from our home. They come over all the time and stay there. It’s great to have that sort of support.

“I am not going concede defeat to this thing,” she said. “I hold out hope that I can beat it.”

ALS was brought to national attention by New York Yankees great Lou Gehrig. Gehrig, slowly dying from the disease, abruptly retired from baseball in 1939. The disease would eventually bear his name.

Despite the disease, Marilyn Leer wears a constant smile and her positive attitude is inspiring.

“If worse comes to worse” said Marilyn Leer, “I can still live each day through my eyes and heart. You have to be able to see the positive.

“This is just not my walk through this, its my family’s, friends’, co-workers’. I have to remain positive to remain the same person.”

That attitude is admirable.

“She’s just amazing how she handles this with a smile on her face,” said Jeff Leer. “Her attitude is always positive. She is so inspirational and courageous.”

Vince Richardson can be reached at 360-416-2181 or by e-mail at .