Alum raises money for ALS cure

Two years ago, Eve Tetzlaff ’93 put her life on hold.

Her husband, Jack Orchard, was diagnosed with Amyotrophic Lateral Sclerosis, or ALS, also known as Lou Gehrig’s Disease. Instead of starting a family, the couple started a foundation to help find a cure. The Jack Orchard ALS Foundation, a patient-driven nonprofit organization, focuses on making ALS research more cost-effective for pharmaceutical companies.

But neither Tetzlaff nor Orchard said they ever thought the illness would become part of their lives.

“I came home after work, and when I put my arms around my wife all the muscles in my back cramped up,” Orchard said. “I thought I had overdone it at the gym. Soon the fingers on my left hand began twitching. Within a few months I had trouble turning a doorknob with my left hand, then with my right hand.”

Now, Orchard no longer has the use of his hands and legs.

According to their foundation’s Web site, www.jackorchard.org, ALS is a progressive illness that attacks specialized nerve cells called motor neurons. As these neurons disintegrate, the body’s voluntary muscles are weakened to the point of paralysis. While neither the senses nor the intellect are compromised by the disease, total paralysis occurs when the lower motor neurons of the spinal cord are attacked. Most ALS patients pass away from a paralysis of the respiratory muscles.

“There isn’t a test you can take [to diagnose ALS],” says Tetzlaff. “Initially, Jack was tested for tons of other diseases. After the diagnosis was made, we were told there was nothing we could do about it.”

ALS usually affects people between the ages of 35 and 65, and most patients with the disease die within five years of affliction. At any given time, only about 30,000 people are living with the disease, a fact which classifies ALS as “rare” and makes finding funding to research a cure more difficult. The Jack Orchard ALS Foundation hopes to increase the incentive to invest time and money into finding a cure by providing grants for short-term therapies that arrest the progression of the disease and thereby increase the population of living patients.

“Jack and I aren’t people to run away from challenges,” Tetzlaff said. “We just couldn’t handle the fact that he wouldn’t be able to golf, ski, feed himself — that there was nothing we could do. There was only one drug approved at the time of his diagnosis. It cost $900 and was toxic to the liver and kidneys.”

Fourteen months after the launch of the organization, the foundation has raised nearly $400,000 for the cause. The couple started the foundation in San Francisco from an office in their home.

“We told our friends that this Christmas, instead of exchanging presents, make a donation,” she said. “We received about $20,000. We started with an idea and just took things one step at a time.”

Tetzlaff and Orchard split their time between two offices — one in California and one in Missouri — placing calls and writing letters to encourage fund-raising and the recruitment of patients, students and mentors. Tetzlaff said she is planning to open an office in New Haven and is eager to see Yale students get involved. There are already 100 college student volunteers for the foundation, she said. But beyond running the foundation, Tetzlaff has the full-time job of being her husband’s sole caregiver.

“I have good friends, family and hobbies — I have a dog, I do yoga, garden and cook,” she said. “Jack is also a strong emotional support, and luckily we are able to have open frank discussions, even though they can sometimes be painful to hear.”

Despite these painful experiences, Tetzlaff is hopeful. A proponent of stem cell research, she is confident that a cure or at least a means of controlling ALS will be found — not only during her lifetime, but during Orchard’s lifetime as well.

“Within the next five years, we expect to see a way of regenerating the nervous system,” she said. “There are too many new discoveries happening in science right now.”

Tetzlaff’s confidence in science is matched by her faith. She described herself as a spiritual and religious person who believes people are given what is necessary to achieve their potential.

“I very much see this process of living with Jack while he has ALS, of caring for him, of working on the issues this disease brings out in our lives and our relationship, and of trying to achieve some higher good in the world as the core of my spiritual practice right now,” Tetzlaff said.

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