Stephen Heywood has taught himself to write with his left hand and start a car by reaching around the steering post and inserting the key in the ignition left-handed. He started to lose the use of his right hand in 1998, shortly before he was diagnosed with amyotrophic lateral sclerosis (ALS), and now drags his right leg when he walks. He is 30 years old.
When he told his older brother, Jamie, the reaction was impulsive, swift, aggressive and predictable. Jamie quit his job in La Jolla, CA, two days later; shortly thereafter, he and his wife, Melinda, loaded their belongings into a rental truck and headed back east to support Stephen and his fiancï¿½e (now wife) Wendy. Their goal was simple: find a cure for the disease in time to save Stephen Heywood.
ALS, also known as Lou Gehrig's disease, is a fatal neurodegenerative condition that causes spinal motor neuron death, progressively paralyzing the patient. Younger victims like Stephen may survive as long as five years after diagnosis. "We have about six months to save his left hand," said Jamie.
Because of their closeness in age and spirit, the siblings were competitive but the rivalry was always friendly. They painted houses together and developed wrestling techniques that simulated aggression but were perfectly safe. The three Heywood brothers have always been close friends as well as siblings.
When Jamie was renovating a house outside Philadelphia, Stephen made regular trips up from Washington to help him. When Stephen had a similar project in Palo Alto a couple of years later, Jamie traveled north from La Jolla. They planned the projects carefully together and chatted about cars, motorcycles, video games, restoring old homes and many other things.
There is little time for small talk now. All conversations revolve around ALS. Stephen misses the small talk. "We spend a lot of time together and he's monitoring me all the time," Stephen said. "I know I walk funny, and I can feel him watching me. I know why. I've even talked to him about it. But I also know he can't help himself."
The Heywoods, always tight-knit, rallied around Stephen after the diagnosis. Growing up, all renovation and maintenance projects in the Heywood's Newtonville home were family affairs, from planning through execution. This provided a model for establishing the foundation.
The foundation's first headquarters was in the basement of their home on Mill Street. When they bought a Victorian house on Hyde Street in Newton Highlands, Jamie and Melinda moved into the second floor and the ground floor became foundation headquarters. Conferences, brainstorming sessions and group discussions take place around their sturdy walnut dining room table.
Before the trip back east, Jamie, who had never taken a biology course in college, picked colleagues' brains at the Neurosciences Institute and hit the Internet for a crash course on ALS. He learned that it is an "orphan disease," meaning that pharmaceutical companies are reluctant to invest in early-stage experiments because the promise of payback is low, because there are only 5,000 new victims a year in the United States. Thus, biomedical companies have not played a role in bringing proposals from the idea stage to the clinical stage, treating human beings. The Heywoods'
At first, Jamie did not know who Mr. d'Arbeloff was. "It was a very challenging phone call," Jamie recalled. "He kept asking, 'Why do you think you can make a difference?'" By the end of the conversation, Jamie had learned the caller's identity and knew he should pay attention to what he had to say. They developed a relationship and met regularly over the next few months. "He helped us identify the problems," Jamie said. "As a result, I felt empowered. We'd faced the worst demons."
Alex and Brit d'Arbeloff made a substantial donation to start the ball rolling. Stephen donated $10,000 from his profits on the sale of the Palo Alto house. Others with MIT ties made contributions, including a substantial gift from William (SB 1956) and Betsy Leitch.
The foundation also raised money by sponsoring the first ALS Belly Dancing Extravaganza at the Karoun Restaurant in Newtonville last June, starring Melinda and her sister, Piper Hunt. Melinda, who is expecting her first child in April, plans to perform in a second belly-dancing fundraiser this summer. Wendy is due to deliver her first child in September.
Wider public interest was achieved through an article by Pulitzer Prize winner Jonathan Weiner in the New Yorker on February 7. "60 Minutes II" has filmed a segment on the Heywoods and the foundation, scheduled to air in April. The attention is flattering and helpful in delivering the message of the foundation, but it also can be wearing. "Things can get intense and emotional," said Stephen.
The foundation does not consider itself a traditional research support organization. "We are jump-starting the development process to move promising research ideas forward to clinical trials," said Jamie. "The way to get treatment to ALS patients who are alive today is not to supplement what is already being done in academic research laboratories. It is in bridging the gap between research and the clinic." The foundation holds patents that assure maximum patient return if a project is successful. "We would love to work with drug companies, but our first priority is to be sure that it doesn't sit on anyone's shelves," Jamie said.
The foundation already has provided support for several experimental projects; the most promising involve gene therapy and stem cell implants. An application is pending for a National Institutes of Health grant to support gene therapy clinical human tests expected to start in the summer. There is no guarantee that Stephen will be among the patients chosen. "Intuitively, I believe it will happen," said Jamie. "I have an enlightened belief that it will all work out. I believe in the karmic scheme of the universe." The stem cell treatment may be in clinical tests by the fall.
In addition to his foundation duties, Stephen has been shopping for a new car that will be more compatible with his limitations, aware that he needs one that will maintain its market value since in all likelihood it will be sold within a year. In the past year, he has been to Australia, Italy, England and France. He takes 16 pills and vitamin tablets a day, tires easily and has to rest a lot. But he plays an active role in the foundation and spends more time with Jamie than they have had together since adolescence. "I just wish we had time to play video games at the end of the day," he said.
A version of this article appeared in MIT Tech Talk on March 15, 2000.