Generous gift for ALS research supports next step in treating ‘disgraceful’ disease

 

The experience of a grandson and grandfather, snuggled in a hospital bed at the grandfather’s home watching cartoons together on a Saturday morning, would seem unremarkable if it weren’t so heartbreaking. In this case, the boy had moved the man’s arm himself in order to wrap it around his little shoulders; the man couldn’t do it on his own. He couldn’t laugh at the antics on the screen either, or walk to the door and give the boy a goodbye squeeze when the show was over.

The man was Christopher Lewis. He was loving and fun-loving, a bold entrepreneur and an avid boater. And he had ALS.

Chris was diagnosed with amyotrophic lateral sclerosis in January 2012. During the dreadful days that followed, his wife Joan and their sons, Chip and Keith, were helpless to stop the inevitable. But hopeless? Not with Chris, who passed away at age 64 in August that year, nor with Dr. Robert Brown, his caring and devoted physician, as their inspiration.

“This disease took away one of the most amazing guys on the planet,” Keith said. “But if there could be a cure for ALS in my lifetime, even though it’s bittersweet there wasn’t one for dad, that would be amazing. And to know that we are contributing to this? My dad would have a big smile on his face.”

UMass Chan Medical School's Robert H. Brown Jr., DPhil, MD, not only treated Chris, he is also a leader in neurodegenerative research. The Lewis family has supported his focused efforts around ALS at UMMS since 2013, when they launched a foundation and its annual musical event, ChrisFest. Recently, they generously gifted funds to boost the Brown lab’s latest ground-breaking endeavor: a series of novel clinical trials to treat forms of ALS through gene silencing therapeutics that could one day become commercially available medications.

“We do whatever we can to help Dr. Brown and his research team,” Joan said. “ALS is disgraceful and horrible. No one should go through this.”

Widely recognized as a pioneer in neurodegenerative disease research, Dr. Brown, who is the Leo P. and Theresa M. LaChance Chair in Medical Research and director of the Program in Neurotherapeutics at UMMS, has dedicated his more than 40-year career to unlocking the secrets of ALS. In 1993, he helped discover SOD1, the first gene linked to the inherited form of ALS. Ten years ago, he was recruited to UMMS specifically to develop gene silencing therapeutics for this disease.

During the past four years, Dr. Brown has partnered with colleagues in the Medical School’s RNA Therapeutics Institute and Horae Gene Therapy Center to launch a series of groundbreaking clinical trials using novel advanced therapeutics to treat ALS in new and innovative ways. The results from one of those gene therapy trials, which focused on silencing the same SOD1 gene Brown discovered, were featured in a July 2020 edition of the New England Journal of Medicine.

Perseverance

Joan and Chris would have celebrated their 50th wedding anniversary in 2020. According to Joan, Chris often joked that he literally “married the girl next door.” Both from Long Island, New York, but not aware of each other as kids, their families moved to Massachusetts at different times, and by sheer coincidence settled in houses next to each other in Framingham. Could anything be more “meant to be”?

They married young and when Chris was serving in the submarine branch of the Navy, which instilled in him a love for boating. After several jobs in sales, he went on to co-found Dynawave, a manufacturer of microwave connectors and cable assemblies; as Chris worked diligently to make the company successful, Joan contributed by performing administrative duties at night. They raised their two musically gifted sons, and with Chris serving as the gregarious and generous host of numerous parties and vacations for family and friends, they built a zestful life together.

"With this money, we are able to contribute to a potential cure..."

It was during the summer before his diagnosis that Chris complained of a Charlie horse that wouldn’t go away. He figured he had bumped his leg jumping from his boat, Perseverance, to the dock. Then his back started to hurt. After months of appointments and tests, the cause remained elusive. Until they met Dr. Brown.

“At our initial appointment with him, Chris was having trouble walking and sometimes used a wheelchair. Dr. Brown came out to the waiting room to get us. Who does that? He was so kind,” Joan said. After the examination and the stunning ALS diagnosis, Chris asked how long he had. “Dr. Brown’s answer stuck in my mind: most people live three to five years.”

Even with a prescribed medication to slow the disease’s progression, “every day, Chris was losing something else,” Joan recalled. He couldn’t move his fingers, then he needed a chair lift. By April he had to give up work, and when he was hospitalized in June, Joan was taught how to feed him. Soon, hospice care was recommended.

“With ALS, you lose everything except your mind. You’re aware of what’s going on, but you’re paralyzed. It was so difficult for him,” Joan said. “For me, it was the worst thing I ever witnessed. To see someone so full of life, so independent, remembering all the good times…to be reduced to this.”

Joan served as the around-the-clock caregiver – “you just do it; you don’t think about it in the moment” – and Chip and Keith were instrumental in Chris’s care in additional ways. Chip, an attorney by day and drummer by night, and Keith, a bassist who teaches music, hooked up a microphone near Chris so he could speak into it, ever so softly, as his voice diminished.

“My dad was extremely sociable and very inclusive,” Chip said. “During his illness, visitors were always there. He loved to talk to people and so this was terribly frustrating for him.”

The loss of his voice, of his ability to work and play, and of his control, was “brutal,” Keith said. “The positive part was spending time with him every day. We knew the inevitable was coming, and we talked about life and he gave me advice. I still hear him in my head, helping me make decisions.”

A dedicated physician-scientist

On the day Chris passed away, just seven months after his diagnosis, Joan struggled to get his breathing machine to work properly.

“Dr. Brown had given me his cell number. Even though he was in California at a conference and it was 4 a.m. there, he answered my call. He told me it just might be Chris’s time. And it was,” said Joan. “Personally, I was hoping that I would be thankful that it went fast. I’m still not. I miss Chris terribly.”

“We are tremendously fortunate that dad was Dr. Brown’s patient,” Chip said. “He answered every one of his questions, offered comfort, and made it as bearable as it could be. He’s dealing with people who he knows won’t survive but is still optimistic and dedicated to a cure.”

The generous funding that Joan, Keith and Chip have given to support Dr. Brown’s ALS research, recognized with a plaque outside his lab, stipulates that he have complete control in directing its use.

“If we could give Dr. Brown a billion dollars, we would,” said Keith. “With this money, we are able to contribute to a potential cure, and we love that there are no strings attached. Dr. Brown can use it the way he wants, and that’s a great feeling.”